Mom called me from GOV.
I could her roommate and knew she was calling from her phone.
Mom said: "I drove to town today"
I asked: "Who's car did you take?"
Mom: "it was your sister's car"
I asked: "Mom I don't have a sister, what color was it?"
I asked: "What did you get up town?"
Mom: "I don't remember"
Mom: "I'm at Ramada, down that long hall, you need to come and pick me up"
I asked: "You have a bed and your warm?
I told her: "Why don't you just stay there tonight and I will come get you in the morning."
Sunday and Monday mom starting getting sick. She was throwing up and not eating. Getting weaker and weaker. She fell down several times. Couldn't walk from the bed to the bathroom. I tried to get her moved to assisted living, but when the nurse arrived she was going to have to go to The Nursing Center.
Bengi and I moved her over to the Nursing center. Then the girls came up and helped me moved her stuff out of the apartment.
If she gets to walking again, she can go to "Assisted Living", but she has to be incontinent. I am hoping that Therapy will help her.
Life is going to be totally different. She now has a room mate.
Mom fell tonight. She had really bad pain today. It was under her shoulder blades, she was in such pain. Said if someone didn't find out what was wrong she was going to go crazy. I can see that. SO I gave her 2 pain meds, I know better, but she needed a break for just a little while.
Then she got up and was walking to the kitchen and just lost her balance. Fell against the lamp and broke it. Mom couldn't turn the lamp on and off because it was too tall. So we do not miss the lamp, but the busted lamp was everywhere.
THEN I was fixing super and opened the microwave. She had tried to cook an egg. It exploded everywhere. I asked her if she had any egg left. She said pieces. Got that cleaned up and the lamp that she broke.
This is a list of the most useful default Photoshop keyboard shortcuts that you can use them to speed up your workflow. Some of them are rarely mentioned, some are more common and some are only available in Photoshop CS5. I hope everyone will find some new and useful shortcuts in this article. So let"s get started! 1. Drag-Zoom Command/Ctrl + Space + Click and Drag Left or Right. Fastest way to zoom in and out with one keyboard shortcut (only in CS5 and only with GPU enabled). 2. HUD Color Picker Alt + Shift + Right Click (Win) or Control + Option + Cmd + Click (Mac). Gorgeous color picker with a color wheel (only in CS5 and only with GPU enabled). Preferences are under General tab. 3. Bird’s Eye View Hold Down H + Click, Reposition View and Let Go of the Mouse to Zoom Back). Works great with large images, when you need to work closely. Fast way to fit the image to screen and then zoom back into another area with the previous zoom ratio quickly. 4. Brush Size & Hardness Ctrl + Alt + Right Click (Win) or Control + Option + Click (Mac). Drag your mouse to right/left to change the size and up/down to change the hardness. It only works with CS5 in both directions. In CS4 only the size change works. You can change the color of the brush preview under Preferences/Cursors. You also need GPU turned on under the Performance tab to be able to see the brush preview. 5. Draw Straight Lines Hold Down Shift. Works with nearly every drawing tool. 6. Move Hold Down Command/Ctrl. Fastest way to move something quickly and then switch back to the previous tool. 7. Pan (Shift + Space) and Zoom Simultaneously in all Documents Shift + Ctrl + Space (Win) or Shift + Command + Space (Mac). Best way to compare or work on more than images at the same time. 8. Hide Panels Hit Tab. You can always show them again by pressing Tab once more, or just simply hover over the edges to show the panels and toolbar temporarily. 9. Full Screen Preview of Files From Mini-Bridge Space and Then Arrow Keys. It works the same way as in Bridge. Make sure that you deselect the images in MiniBridge or collapse the panel when you continue working in Photoshop. 10. Text Size Command/Ctrl + Shift + . or , you can use it for selected text. It won’t work by only selecting the text layer. 11. All Caps for Text Command/Ctrl + Shift + K. Quick way to switch between lowercase and uppercase text. Make sure you type without Caps lock to be able to use this. 12. Tracking and Kerning Alt/Option + Left and Right Arrow Keys. Useful way to make equalize the distance between characters. If you select a word, a line or a whole paragraph then you change the Tracking. If you click between two characters you change the Kerning. 13. Leading Alt/Option + Up and Down Arrow Keys. Quickly change the distance between selected lines. 14. Baseline Shift Alt/Option + Shift + Up and Down Arrow Keys. Easy way to use one text layer but have different positions for the text. 15. Fill Command/Ctrl + Backspace – Foreground Color, Alt/Option + Backspace – Background Color, Shift + Backspace – Fill Options. Great way to fill color into selections or change the color of text and vector shape layers. 16. Reset Any Dialog Box Alt/Option + Click on Cancel. Instead of canceling a dialog box and returning to it try Reset and save time and effort. 17. Changing Opacity and Fill Opacity Numeric Keys, Shift + Numeric Keys. This will change the opacity and fill of the selected layer (or even more than one layer at the same time in CS5) and it will change opacity and fill of the tool if you select a drawing tool. 18. Invert Colors of Selected Layer or Layer’s Pixel Mask Command/Ctrl + I. This is a fast way to invert visible parts of a layer if you invert the colours of the layer mask. 19. Switch to Precise Cursors for Drawing Tools Hit Caps Lock. If you don’t want to see the edges of the brush you can switch to precise mode easily by having Caps lock on. 20. Reset Preferences Ctrl + Alt + Shift (Win) or Command + Option + Shift (Mac) When Loading Photoshop. If you want to start with the default settings and user interface hold down these buttons while Photoshop is loading. 21. Switch Foreground/Background Colours Press (X). Fast way to switch between the selected colour. 22. Mask View Alt/Option + Click on a Layer Mask. Great way to clean up the mask after you save it from a selection. Using it again will switch back to normal view again. 23. Disable Mask Shift + Click on a Layer Mask. You can quickly show the original contents of the layer with this keyboard shortcut. Using it again will enable the mask again. 24. Intersection of Selections Alt/Option + Shift + Click With a Selection Tool Over Another Overlapping Selection. Easy way to keep only a specific part of a selection. 25. Merge All Visible Layers to a New Layer Ctrl + Alt + Shift + E (Win) or Command + Option + Shift + E. If you want to keep all your layers but you also need to merge them together to be able to use something you can convert them all into one Smart object or use this keyboard shortcut to make a duplicate merged layer. Bonus (Easter-Egg) Keyboard Shortcut Alt/Option + Click on Panel options under the options of Layers panel. Conclusion Of course you can use Photoshop without keyboard shortcuts, but you can be much faster and productive if you spend a little time on getting used to have one of your hands over the keyboard all the time and memorize some of these combinations. Feel free to include some other useful shortcuts in the comments section.
While in church today, J Fluman was talking to mom about what class was she in. Mom told her that she started to school at Glenwood, and that her mom made her read all the time, so they moved her up a grade in school.
She said that she was asked to read in class and that her sister "Ernestine" said "Jodean just kept reading and wouldn't shut up"
She has no idea what date it is. She was paying her bills and she wrote the 27th date on her check.
She kept asking what day it was.
She was going to take a shower, but didn't want to get up. As she was sitting there she asked me if I had changed the battery in the clock on the wall. I told her that I had when we first moved in. She said that it is losing time. I checked the time and it was 7:29 pm exactly what the clock says. She said that when she gets up in the morning it is 6 on the clock and it is really 8. So I asked her how it got back to the correct time. She said "I was just wondering that myself."
I have seen great confusion in her and it seems to be getting worse.
She went to bed and I heard her complaining. I went to her bed room and she couldn't get in bed. The maid had made the bed and she couldn't get the covers pulled down. She complained about the bed being to high.
So I helped and got her tucked in. Went back to work and she was up again looking for eye drops for her eyes. She said she had some cream that the eye doctor had given her. It was up there in the cupboard. I looked and didn't find anything.
Mom has had a red eye She called her eye dr and made an appointment for Tuesday at 11
The Next Morning: Mom was late getting up she was at table taking her pills , I had her jacket and started to put it on her she said she needed to brush her teeth. That if she was going to dentist she should brush her teeth. I said "Mom your going to the eye Dr" then she said that she didn't need to brush her teeth!
Eye Doctor told her she had a sty on her eye. We went to get drop medication at the pharmacy. Azasite 1%,, 5 ml for $66. 2 little drop bottles that need to be kept in the refrigerator, they were in regular pill bottles that the pharmacy puts all meds in. I showed mom where I was putting them.
When we got home, I put a drop in her eye. I then left to go to OKC. Wednesday she didn't say anything about her eyes.
When I called Thursday morning, she couldn't find her drops. She said she used them all and they were in the trash and she was using the other drops that the eye doctor had given her. The eye doctor had not given her any other drops. We had bought some over the counter drops, so I guess that what she was using.
So I first called the pharmacy and he told me that there should be 15 drops in each bottle. It had only been 1 1/2 days since I left.
Next I called the home health where she lives and told them mom's story. So she went up to mom's room and went to the refrigerator and found the drops.
When I got back to mom's, she said she needed to put a drop in her eye. So I got out her drops, she tried to put them in and said that the bottle was empty. I took the bottle and put drops in her eyes. Yes it was a little hard to squeeze the bottle and mom doesn't have much strength.
Appreciating the preciousness of human life, based on the understanding of one's body constantly changing, ageing, moving toward death since birth and the uncertainty of life helps us appreciate life and prepare for death. It is natural for one's body to decay especially when accelerated by disease processes. In the final stage when life-sustaining systems begin to shut down, physical, mental, emotional and spiritual changes may occur over weeks, days or hours. Each person's experience is unique, but there are some general similarities.
The following is a very simple account of the normal changes that may occur in the final stage of living, commonly called "dying", with some suggested ways of caring. It is intended to help the dying and their loved ones to understand and be prepared for these changes, in order to provide appropriate safe support and comfort holistically.
Physical Weakness / Lack of Energy / Loss of Interest in Everyday Things
As the body's systems weaken less oxygen is available to the muscles, the life force weakens, and more effort is needed to complete everyday tasks and one may become embarrassed, discouraged, ambivalent, depressed, irritable and/or just naturally become more interested in matters that seem more important: matters of the mind, heart and spirit. This is often a time of self-examination, of questioning, of looking for the meaning of life.
Caregivers can best help by assisting the person with physical tasks, while being sensitive to their feelings, maintaining their dignity and attending to their comfort as much as possible, especially with regard to symptom control and protection from injury. Love and humour can take the tension away from a stressful situation. Laughter opens the heart and can free one to see past appearances and circumstances, leaving the burden of self and entering into a instant oneness with another, that is blissfully rewarding. Psychological and spiritual support means being along side as a good friend: patient, non-judgmental, compassionate, allowing the person's own wisdom to evolve. When regrets appear, see them as lessons learned, encourage memories of meaningful events and practice rejoicing, by seeing the benefits of the kind actions of one's life, allowing whatever faith, hope and love the person has, to exist and develop freely.
Withdrawal from Family and Friends / Increased Sleepiness / Coma
Neither family, friends nor wealth can be taken with us when we leave this world. Much of the packing it all up and leaving it behind is a solo job and one needs time and privacy to do it. Visitors can be very exhausting and the person may feel they have to entertain their guests even if they can't get up out of bed. Too many visitors one day will often result in the person being more tired and/or more withdrawn the next day. Sometimes the person may sleep more, be difficult to arouse or uncommunicative. This may be due to disease processes, medication, or the person's desire to withdraw from social contact. Simply being a loving presence near the person, holding their hand, sending loving thoughts, silently praying, meditating, just being there for them provides a comforting, safe and peaceful atmosphere that facilitates the person's inner work. The caregiver should try to respect the person's wishes and be aware of what personal desires come up in their own mind and how these can be addressed without disturbing the mind of the dying. Be careful of what you say over their body while the person is asleep or unconscious, they may hear you and it could upset them. Many people who have recovered from a coma (a state where there is no response to voice or touch stimuli, though eyes may still be open) have reported being aware of what others said and even thought in their presence.
Random jerks or twitches can be due to dreams or nightmares, you can reassure them with your kind tone of voice and/or a gentle touch on their hand or arm. The dying are very sensitive to what is communicated by the caregiver's body, speech and mind and the caregiver can become more aware of reactions and messages from the person by watching and listening. The eyes, facial expressions, and breathing changes often indicate what the person is feeling or thinking. The reason why communication is possible on this level and why you can trust your deepest intuition is because the basic nature of every being is pure and knowing, as Christians may say God-like or as Buddhists say having all pervasive, indestructible wisdom nature. Awake or asleep this is always present and available if one is relaxed, open and receptive, but it is much more familiar and easy for those who are habituated to this awareness through meditation practice. The depth of one's spiritual practice is communicated by its own power and has remarkable benefits for others. Stripped of dogma and doctrine, reputation and position, sex, age, and relationship, leaving one's 'self' to enter nakedly with no agenda, into unity with the person, even for a brief moment liberates both parties from the bondage of duality temporally and is profoundly comforting.
Loss of Appetite
Food is a fuel that helps sustain life. As the digestive system gets weaker, food may become more of a discomfort than an enjoyment, some medications may change the tastes of food, and finally the energy required to process the food becomes greater than the energy derived it. Any of these may produce a loss of appetite. Eating habits change. The person may become overwhelmed by a "normal size" meal. He/she may take a few mouthfuls of their "favourite" meal and feel full. Small attractively presented meals may tempt them. But consider who is getting the satisfaction - family and friends who want to nourish their loved one, so that the person can get better and live longer? It's often the hardest thing for the family to face; but the refusal to feed the body is not a refusal for nourishment. It is a sign that priorities have changed to nourishing the soul/spirit/mind. Forcing the person to eat or making them feel guilty if they don't, only isolates and distances them even further. The person approaching death needs to know that it is OK not to eat. Respect and acceptance brings people closer together which comforts the dying person and the caregiver too.
As the swallowing reflex weakens, swallowing becomes difficult. It may become frightening for the person to attempt to eat or drink or the person may be slipping into unconsciousness. It is best to offer very small amounts (half a teaspoon) and observe the throat to see if swallowing has taken place. Tolerance of food generally progresses from solid to soft to liquids (soups and dietary supplements), to ice chips and spooned or sucked water. It is safer to feed a person who is upright, but if the person is used to eating in an incumbent position, it is generally easier to swallow if their head is kept straight, not turned to the side. The sucking reflex seems to last a long time as the caregiver will see when attempting to clean the person's mouth or teeth. Mouth care is important for comfort and dignity. Medications can be crushed and capsules opened and mixed with jam, jelly, yoghurt or like foods. Do not crush time-release or long acting medications. Discuss with your nurse or doctor any problems with medications; alternative medications or modes of delivery are available. Do not give food or liquids to a person who is unconscious. It may cause the person to choke or to inhale the foreign matter.
The level of awareness and cognition can change frequently and unexpectedly, due to many causes (i.e. disease processes, tiredness, medication). When a person becomes confused, there can be a decrease of oxygen to the brain and they may not recognise familiar people, places, the time of day or year etc. or they may hear voices or see visions. Do not negate what they say or argue with them. This is their personal reality, which can be a pleasant comforting experience for the person and could also be a sign that the person's mind is peaceful or joyful with happy expectation. But if their experience upsets or disturbs them, gently touch or stroke their arm or hold their hand and speak calmly with a soft reassuring voice and remind them of who you are, where they are, what day it is etc. Aromatherapy and their favourite music or chanting of their faith, is also helpful.
A person may become restlessness and make repetitive motions like picking at the bed linen, their clothing or the air. This can be a sign of less oxygen available in the brain or of being distressed due to having pain, nausea, constipation or a full bladder or could be due to being confused or anxious about something. Or if the person is throwing or kicking bed covers off even in a cool room, it can be the first stage of the death process when one feels like being buried under a great weight. Before rushing in to do something about it, be calm and still. Observe and listen with your mind and heart to what the person could need. Do not try to interfere with their restless motions but protect from injury and check out the physical side first. Pain doesn't conform to schedules. After the physical problems are controlled, by using a soothing voice, remind them of their goodness and virtues, along with music, aromatherapy or reciting the person's favourite spiritual practice may help calm and reassure them. Likewise one can distract the person's mind away from the disturbing thought or nightmare even if the person is unconscious by verbally describing a favourite place or special experience. And even simply by giving the person assurance that it is OK 'to let go', could address the real problem that the person is unable to articulate.
Restlessness can also be a sign of spiritual crisis which needs urgent attention, not waiting for the minister or religious person although they could of course be called to attend, but there is no time to lose, one needs to know what the dying person believes or what prayers or meditations practices that they do and also to remind them of the positive things that they have done in their life, remind them of their faith, their heaven or Amitabha pure land, recite these prayers etc for them and whether the person has religious belief or no faith, he or she can be encouraged to generate universal love and to feel and be that love (forgiving oneself and all others and to generate love and good-will for all without exception). Universal Love replaces fear with calm and confidence.
As the person gets weaker and is no longer able to get out of bed, the muscles that control the bowel and bladder may relax and "incontinence" or involuntary loss of urine or faeces may occur. Often the person will feel embarrassed and/or may awaken if asleep. Attend to them with dignity and respect and avoid exposing their private parts to others. Its important to keep the skin clean and dry or the skin could develop a rash or open sores and cause more discomfort. Use plastic gloves and soap and water or a disposable skin wipe. Often when a person needs a bowel movement they will get grumpy, irritable or restless. It's a good idea to keep a record of the bowel movements to tell the nurse or doctor. One can't expect a normal daily bowel motion but too many days between eliminations can signal a problem. However, with little food intake there is less reason for a bowel motion.
As the kidneys shut down and the skin takes on more elimination work; the person may experience itching over different parts of their body and also combined with increased sweating from failing thermal regulators it is difficult to provide comfort. Different things work for different people: some like warm bed baths, others cool tepid sponging, or even a cool compress to the forehead and pulse areas can cool down and soothe. Tea tree oil, calendula or lavender oils or other commercial products can give relief, but usually strong perfumes are not tolerated. Change the bed linen if soiled with sweat. This is a good opportunity to give a back rub and reposition the person into a more comfortable position.
Body Temperature and Colour
Mechanisms that control the body's ability to control its temperature will start failing. The skin may sweat and still be very cool or may be hot. The person may kick off the bed linen but be cold to touch. As the heart becomes weaker, circulation fails to adequately reach the hands and feet and they will become cool to touch and the nails maybe bluish, while the arms and legs maybe pale, grey, mottled or purplish. At this time its best to follow the wishes of the dying to keep them comfortable even if it's against reason (like trying to keep a person covered when they keep kicking the blankets off). However it's important to avoid drafts that may cause the body's temperature to fall too fast and cause shivering. Normally, repositioning is advised every 3-5 hrs, but closely monitor whether it becomes too painful to turn or if one position is not tolerated. If possible give extra pain relief before a necessary turn (like when cleaning incontinence). If close to death it is not necessary to turn for circulation. It is only necessary to turn the patient if it helps breathing or provides more comfort. Always observe how well a person settles into a new position and if they don't settle, try another position, or gently return them to the previous position, and/or give pain relief. This is a difficult judgement that can be a great challenge for the caregiver because things are always changing. One position favoured one day will not necessarily be tolerated the next day. A loose sheet from the shoulders to the knees (called a "draw sheet"), under the person's body will help turn or lift the person up the bed (One person on each side of the bed, holding their side of the sheet, rolled up close to the body).
If breathing is difficult with or without oxygen being given, sometimes a fan blown over the body to give the sensation of being in fresh air, combined with the mental suggestion of visualising sitting on a beach in the wind or the top of a high hill can give relief. Keeping the head elevated will help breathing, be careful to maintain support of the lower back. A lubricant on the lips will help prevent cracking. And mouth care with mouth swabs can help keep the tongue and mouth moist and less dirty. Although this will not be necessary or may not be tolerated by someone close to death.
A change in breathing pattern is significant during the dying process. When the exhalation (out-breath) is longer than the inhalation (in-breath) this is a sign that the dying process has begun (even weeks before actual death). Next the breathing becomes irregular, although irregular breathing can occur at anytime when someone has a lung condition that causes shortness of breath. Closer to death, the breathing involves the whole rib cage and is fast (up to 30-50 breaths per minute) mostly through the mouth and then may pause for even 10-15 seconds before the next in-breath. This period of no breathing is called "apnoea". This pattern (called Cheyne-Stokes breathing) of shallow quick breaths followed by spaces of no breathing can continue for a few days, hours or minutes before the person actually stops breathing, but rarely does a person improve from this stage.
There may be a rattling noise (often called the "death rattle") at the back of the throat, caused by the accumulation of saliva because the person can no longer swallow. This is often distressing for the helpers but it doesn't seem to bother the dying person. The pool of secretions is too far down the throat to be suctioned. Sometimes turning the person with their head to the side can help drain the secretions from their mouth. Dying people breath better when they are not completely lying on their side, as a health person would sleep. Lying towards the right side is favoured because the heart is not obstructed and according to Buddhist medicine it supports a happy peaceful mind, by blocking the right channel. The Buddha passed away lying on his right side. Buddhist scriptures say to block the right nostril with the ring finger, face resting on the right hand. But if there is a medical reason or the person just can't tolerate the right side, comfort is the priority, to keep the person's mind happy.
Unexpected Alertness and Increased Energy
Often a day or two or even a few hours before death, the person has a surge of energy, wakes up, becomes alert, can sometimes eat or talk and can spend some quality time with loved ones. This is a very special time for final spiritual practices and mental preparations, which can be shared with loved ones if it is the dying persons wish. This is a very precious time because it normally doesn't last long, as most people become unconscious (unresponsive) hours or days before they stop breathing.
Signs of Imminent Death
Eyes have glassy fixed stare with large pupils Pasty grey, or blue greyish colour present especially on lips, hands and feet Hands and feet can be cold Jaw open, breathing through mouth very rapid or very slow (often with rattle) with pauses of 20-50 seconds between breaths Unresponsive to voice or pain
It is most important not to do or say anything that might disturb or anger the person, like speaking abruptly, arguing, crying, rough handling; maintain a peaceful atmosphere with people praying, meditating or chanting according to the dying person's wishes or as instructed by their spiritual guide/teacher. Any supporters can generate limitless universal or devotion in their hearts and the wish for the dying person to be released from suffering with this love or devotion/faith and become unified with love, with god or with their source of inspiration and virtue.
No breathing (chest does not move) No heart beat (no pulse) Pupils large, do not change Sometimes release of bowel or bladder
According to Buddhism, death is a process with stages: after conception, formation proceeds from subtler to grosser, but at death there is dissolution from grosser to subtler. The four elements: earth (hard substances of the body), water (fluids), fire (heat), wind/air (energy, movement) degenerate and dissolve in sequence and there are external signs and internal visions at each stage. In the final stage of death all the gross consciousnesses dissolve into the emptiness of clear light, where with previous training one can discover the fundamental innate reality. Because of this continuity of mind moments, the state of mind at the time of death is vitally important, it's most important to die with a calm and peaceful mind; with strong spiritual/ positive thoughts prevailing.
Friends and family can best help the dying continue their journey after "clinical death" by generating calm, accepting, supportive thoughts for the deceased, each other and expanding into altruistic, universal good-will and love through their prayers and meditations. Buddhist masters recommend maintaining a peaceful atmosphere and if possible allowing the death process to proceed undisturbed, by not touching the body until all the heat has left (indicating that the most subtle consciousness has left the body). If the body needs to be cleaned or moved it is advised to touch the top of the head first so that the consciousness abiding in the heart chakra becomes aware of this and leaves the body through the crown. Beginning with the facial muscles, "Rigor Mortis" (Latin for stiffness of death) develops, then wanes from 3 hrs to 36 hrs depending on muscle mass and environmental conditions, (cold retards rigor mortis) with a maximum stiffness at 12-24 hrs. If there is not too much disease, physical damage or medication in the body, a small amount of blood leaves from the nose and a small amount of white fluid leaves from the sexual organ, which is a certain sign that the most subtle consciousness has left. This can take up to 3 days and even longer in documented cases of very accomplished meditators. According to Buddhist texts, death is the separation of body (physical form) and "mind" formless, clear, luminous and knowing. (Only the most subtle level of mind transmigrates.) After the consciousness leaves, the body will soon begin to smell from the decomposing process and all that is left is a corpse.
A diagnosis of cancer presents many challenges. In the effort to cure the cancer, the physical effects of the disease and treatment often are focused on most. However, it is also important for the health care team to address the psychosocial effects, which are the emotional and social concerns that can greatly affect patients' well-being. According to a 2007 Institute of Medicine (IOM) report on this topic, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs, psychosocial problems include:
Lack of information and support
Emotional difficulties, including depression and anxiety
Lack of transportation
Disruptions to work, school, and family life
Insufficient financial resources The IOM report notes that such psychosocial obstacles often interfere with a person's healthcare and diminish his or her health and functioning. However, the influence of emotional and social issues is usually significantly reduced through effective communication between the patient and the doctor. Patients and caregivers can take an active role in addressing these challenges by asking questions and talking with the doctor about both physical symptoms and psychosocial concerns, such as coping with the diagnosis, paying for medical bills, or getting to appointments. There are many support services available for people with cancer, and being linked to the appropriate services usually provides an enormous benefit to the patient's overall care.
Patient information and support
Access to current information about a specific cancer type or the related treatment options help patients make more informed decisions about their health care. Patients also should know the short-term and long-term side effects of their treatment to anticipate how their needs may change in the future. In addition, many national organizations offer a wide range of programs and support services for people with cancer and their families.
Many people with cancer experience emotional difficulties, including anxiety and depression. And, patients with untreated depression or anxiety may be less likely to take their cancer medication and maintain their health. They may also be more likely to withdraw from family and others offering support. There are resources and services available to help patients maintain their emotional well-being and get help for depression or anxiety, such as peer support groups, individual or group counseling, medication, and online communities for support.
Access to transportation
Getting to appointments and picking up prescriptions is difficult for people who don't have access to transportation. Even people who do have transportation may find that driving themselves is difficult if they are feeling ill. Community resources may be available to help; some hospitals or local agencies have low-cost or volunteer transportation programs, and some non-profit cancer organizations provide funds for taxi costs. CancerCare provides information on finding help for transportation.
Financial assistance and advice
Lack of adequate health insurance may prevent many patients from seeking treatment, taking necessary medications, or attending regular appointments. People with a limited income may also have difficulty affording basic necessities, in addition to medical care. Even patients with health insurance may find that the costs associated with cancer treatment are more than expected. Learn more about managing the cost of cancer care, including information on understanding health insurance, a list of national, local, and governmental sources of financial assistance.
Managing health care information
During cancer treatment, there is often a lot of information for patients to remember, keep track of, and act on. For instance, patients need to know when and how to take medication, when to go to appointments, and what to expect after treatment. To manage this flow of information, it is recommended that patients keep a written record of all procedures, treatments, and medications received. Information and education about cancer treatment and recovery is available that can help patients manage their health care. And, ASCO Cancer Treatment Summaries are printable forms that you and your doctor can complete to help you keep track of what treatment is planned, what treatment was received, and what follow-up care is necessary.
For some people, part of their cancer treatment plan includes significant changes in lifestyle and habits, physical activity levels, or diet to help relieve side effects or reduce chances of cancer recurrence (the cancer returning after treatment). For people who smoke, quitting smoking is often an essential part of recovery. These changes are difficult to make, and it is important that patients receive the support and resources they need. Learn more about healthy living after cancer.
Managing life disruptions
Many patients may have a significant change in work schedules, and some people must stop work entirely during cancer treatment. The Americans with Disabilities Act and the Family and Medical Leave Act provide legal protection for disruptions in work due to cancer treatment. Read more about dealing with workplace discrimination and going back to work after cancer. School can also be disrupted; learn about going back to school after cancer. And, patients may also find that they have trouble performing daily activities. Home care services are often available for people who need greater assistance in the home, either with their medical needs or activities of daily life.
Institute of Medicine Report
As mentioned above, the 2007 IOM report, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs, provides 10 recommendations that can help doctors identify emotional and social needs, refer patients to necessary services, support patients in managing their illness, coordinate psychosocial and medical care, and follow-up on the effectiveness of these interventions.
The responsibilities of caring for a person with cancer may seem complex and overwhelming at first. Depending on the person's needs, you may provide emotional support; practical assistance, such as help with medical care, financial issues, or insurance issues; or serve as the communicator between the patient and the health care team. The following tips are designed to help you become an effective caregiver: Remember that caregiving is a team effort. A caregiver is a member of an important team that also includes family members, friends, other volunteers, and the health care team. Each member of the team brings different skills and strengths to the group and is working towards a common goal—providing effective care. If you are the primary or lead caregiver, help each team member express concerns, opinions, and emotions, and ensure that the person with cancer has a central role in all discussions and decisions, if possible. It is very important for the person with cancer to have a sense of control and a way to be as proactive as possible.
Create a list of tasks. Caregiving, like any responsibility, is made up of individual tasks of varying importance. Make a list of all of your caregiving tasks and use it to decide how to divide the tasks between friends, family, hired professionals, and community organization volunteers.
Be proactive. Being proactive means taking charge and planning as much as possible to prevent crises. This can also help provide a sense of control and order. Create schedules that identify which relative, friend, or other volunteer is available when and for what tasks. Make sure that all of the caregivers involved have some time to be away without feeling guilty or concerned. Long-distance caregiving takes even more planning. Find out more about how to be an effective long-distance caregiver.
Be a problem solver. To be a good problem solver, identify problems, find out what needs to be done, and follow through. Most importantly, do not be afraid to seek guidance and help from others. Look for creative solutions that work for your situation.
Try to stay positive. Sometimes it’s easier said than done, but having a positive attitude can help set the stage for everything you do. You may not have control of what happens to you, but you can change how you react. Turn to members of the caregiving team, relatives, friends, religious or spiritual advisors, and health care professionals to help you cope.
Know yourself. Recognize your own strengths and limitations as a caregiver. This allows you to set boundaries and gives you the ability to know when to ask for help. Setting limits can be beneficial to both the caregiver and care recipient; the person with cancer can exercise some independence, while the caregiver gets a needed break. Compassionate caregivers must recognize when they need a break so they don’t become overwhelmed or burned out. Read more about how caregivers can take care of themselves.
Consider professional and volunteer services. These services include professional home care, home-delivered meals, and help with everyday activities. Some community agencies have volunteers who can help with transportation or advocate for health insurance or other benefits. A local hospital or community social worker is a great source for referrals to programs in your community. Learn more about different caregiving options.
Caring for the emotional well-being of the person with cancer
Communicate. One of the caregiver's most important jobs is to communicate openly with the person who has cancer. Choose a time that is convenient for both of you to sit down and talk. Provide assurance that he or she will retain decision-making power and be a central part of all discussions and decisions. Be receptive to the person’s feelings and opinions and allow enough time to fully communicate your feelings.
Accept the limitations of a person who is seriously ill. For example, a person who has undergone chemotherapy may not be able to taste a meal you worked hard to prepare, or a person who is on pain medication may not notice all of the small things you do. Also, be aware that caregiving tasks may change depending on the person’s evolving health issues.
Include the person with cancer in activities that provide meaning or pleasure. Even if the person with cancer is no longer able to actively participate in activities he or she enjoys, look for other ways to encourage involvement. It is important to help the person stay connected to the world beyond the cancer and to maintain a sense of normalcy.
Participating in medical and physical care
Gather information about the patient’s diagnosis, treatment, and prognosis (the chance of recovery). As a caregiver, learn more about cancer, including the patient’s type of cancer. Many patient advocacy groups also can provide information related to specific cancers. Ask the doctor about other reliable resources. In addition, you may want to keep a medical journal, which can include the patient’s medical appointments, test results, medications and dosages, symptoms and side effects, new questions between appointments, and names and numbers for resources. Find out more about managing a patient’s care.
Be an advocate. Take an active role in the patient's medical care. If possible, accompany him or her to all medical appointments. It is helpful to write down questions for the doctor in advance and to write down answers. In addition, give the doctor any new information that helps him or her make informed decisions. Learn more about communicating with the doctor.
Learn how to provide proper physical care. If a person requires physical care—such as bathing, dressing, feeding, using the toilet, and grooming—consider consulting with a health care professional or accessing health care videos, manuals, or books that explain how to perform these tasks. Alternatively, you may want to hire professional help.
Addressing legal and financial issues
Ask about being assigned an insurance case manager. Many insurance companies will assign a representative to help manage insurance concerns for a person with a serious illness. This representative can be a resource for determining which benefits are covered, deciding whether arrangements can be made to access out-of-plan benefits for medically necessary care, finding available home care, or troubleshooting insurance problems.
Determine financial status. Providing care for a person who is seriously ill can be financially challenging. For services that cannot be provided by family members—such as medical, pharmaceutical, or therapeutic services—determine who will perform these services and how they will be paid. Knowing the financial status of the patient can help guide future health care choices. Some community organizations may provide financial assistance for caregiving-related and treatment issues.
Have legal documents in place. Legal documents called advance directives are an effective, legally binding way to communicate a patient's wishes. More importantly, a health care proxy (a person who can legally make health care decisions on another person’s behalf) can be designated to speak for the patient when he or she is unable to do so. Identifying a health care proxy is an important decision that should be made at an early stage and communicated to the professionals involved in care. Other documents, such as a durable power of attorney for health care and a living will, may also be needed.
Caregiving roles vary in each situation and are likely to change during the course of the disease.
Caregiving can be both rewarding and challenging.
Caregivers should ensure that they care for themselves while providing care for the person with cancer. Caregivers are typically family members or friends who provide vital physical, practical, and emotional support to a person with cancer. They are increasingly handling tasks previously done by health care professionals. Caregivers may have a range of responsibilities on a daily or as-needed basis, including providing support and encouragement, giving medications, helping control symptoms and side effects, coordinating medical appointments and providing transportation, assisting with nutritional needs, helping with housekeeping, and handling insurance issues.
There are many ways to fulfill the role of caregiver. For some, it may mean providing 24-hour care. For others, it may mean researching medical information or arranging for outside help. Situations vary in their complexity, and no one scenario applies to all people with cancer and their families. Moreover, as the disease and treatment changes, so will the caregiver's role.
Caregiving roles can generally be broken down into three categories:
Live-in caregiver. One person typically assumes the role of the primary (lead) caregiver, often because of emotional, geographic, and logistical reasons. One-quarter of care recipients in the United States live with their caregivers, according to the Family Caregiver Alliance.
Shared responsibility caregiver. Some caregivers share the responsibility with other family members, based on who is able to best perform each of the caregiving tasks. Working productively with family members in times of stress can be challenging because previous family conflicts are more likely to surface or intensify. However, caring for a person with cancer can also bring families closer together. Learn more about sharing caregiving responsibilities with family in a positive way.
Long-distance caregiver. In some cases, care is managed by a family member or friend who does not live near the person with cancer. A long-distance caregiver assumes the responsibility of coordinating services—often by phone or by email—as well as arranging for local volunteers, friends, and colleagues to assist the person with cancer. Caring for a person with cancer who lives far away can be emotionally exhausting because all of the usual caregiving worries tend to be magnified. It may also cause financial stress. However, there are steps you can take to be an effective caregiver no matter how far away you are. Find out more about long-distance caregiving.
The challenges and joys of caregiving To manage the challenges of caregiving, it is important to assess all of your caregiving options and find ways to take care of yourself while providing care.
Potential challenges of caregiving include:
Physical and emotional stress
Less time for personal and family life
The need to balance job and caregiving responsibilities
Lack of privacy
Feelings of isolation and loneliness Read about ways caregivers can take care of themselves.
While it is important to address the hardships and obstacles to providing care, it is also helpful to focus on some of the fulfilling aspects of caregiving:
Caregiving shows the person who is ill that you are committed to providing as much needed help and support as you can.
Caregiving makes a difference to the quality of life and well-being of the person who is ill.
Caregiving gives you a unique opportunity to develop or renew a relationship with the person who is ill.
Caregiving helps set the tone of respect and caring for other family members, regardless of their situations.
As a person nears the end of life, it is often difficult to know what to expect. If the person with cancer is being cared for at home, there may be additional responsibilities for the caregivers than if a person is being cared for in a hospital or hospice facility. Regardless of the situation, it is important to know that the health care team will continue to provide the best care possible until the end of life, and that everything possible will be done to ensure that death will be peaceful and dignified.
Signs of approaching death
Death from cancer usually occurs after a person has gradually become weaker and more tired over several weeks or months. Although it is not always possible to predict how long someone will live, some common signs and symptoms show that a person is entering the final weeks and days of life. Knowing what to expect helps both the person and the caregivers feel less afraid and helps ensure that loved ones can be together when death occurs. If the person is receiving hospice care, the hospice staff will talk with the person with cancer and the family about what to expect. If the person is in a hospital or other facility, ask a doctor or a nurse to explain what to expect as death approaches. For many people and families, knowing this information serves to relieve anxiety and allows for better planning. In the case of a parent (of young children, especially) who is dying, it is important to allow time to prepare children for upcoming events and ensure they are well taken care of at a time of increased stress and demands on the other parent.
The following signs show that a person with cancer is entering the final weeks of life. Not everyone will experience the same set of signs and symptoms, nor will the following occur in any specific sequence:
Progressive weakness and exhaustion
Needing to sleep much of the time, often spending most of the day in bed or resting
Weight loss and muscle wasting
Loss of appetite and difficulty eating or swallowing fluids
Decreased ability to talk and to concentrate
Loss of interest in things that were previously important
Loss of interest in the outside world and wanting only a few people nearby; the person with cancer may want only a few visitors or may need to limit the time spent with visitors. The following signs and symptoms are common during the final days of life:
A slowing of breathing, sometimes with very long pauses between breaths
Congestion when breathing with gurgling or rattling sounds as the person becomes unable to clear secretions from the throat
Cool skin, especially the hands and feet, that may turn a bluish color
Dry mouth and dry or cracked lips
Decreased amount of urine
Incontinence (loss of bladder and bowel control)
Physical restlessness or repetitive, involuntary movements
Disorientation and confusion about time, place, and identity of people, including family and close friends
Hallucinations (seeing or hearing things that are not there). These are normal and are not a cause for concern unless they scare or upset the person with cancer.
Drifting in and out of consciousness and possibly entering a coma Providing comfort
As a family member or caregiver, there are things you can do to help make the person more comfortable as death approaches. If he or she is receiving hospice care, the hospice staff will show you how to provide general care and comfort measures. If the person is in a hospital or other facility, ask the staff how family members can be involved in caregiving. Some general guidelines for providing comfort are listed below. Each family is encouraged to form a plan with the health care team that best matches the person's needs.
Use an eggshell mattress or foam cushions to make beds and chairs more comfortable. Help the person change positions frequently and change bedsheets at least twice a week or more often, as necessary.
As much as possible, elevate the person's head or turn the person on to his or her side to help make breathing easier.
Use blankets to help keep the person warm. Do not use electric blankets as they can cause burns. Gently rub the person's hands and feet, or soak the hands and feet in warm water.
To ease confusion and disorientation, speak in a clear, calm voice and remind the person of the time, place, and who is there with him or her. However, sometimes speaking clearly may not help when there is delirium (mental confusion).
If the person can swallow, offer sips of liquid through a straw or from a spoon to help keep the mouth moist. Glycerin swabs and lip balm also help with dry mouth and lips.
A gentle massage can be comforting and can help with blood circulation and dry skin. Use a lotion without alcohol, which tends to further dry the skin.
Just sitting with and talking to, gently touching, or holding hands with the person is one of the best ways to give comfort and reassurance. Often, just being with a loved one is all that is needed so he or she does not feel alone.
Controlling pain is an important part of dying comfortably and peacefully. Uncontrolled pain often causes other symptoms to worsen, such as fatigue and confusion, and may make it more difficult to concentrate on time spent with family and others who care about the person. As cancer develops to an advanced stage, pain can worsen and become more difficult to control. However, no one should expect to have to tolerate significant pain. Doctors who specialize in pain management and palliative care specialists can help manage pain that is difficult to control using a variety of measures.
The doctor and the health care team need to know what type of pain is felt and what methods have and have not worked to control the pain. Some people may talk more openly about pain than others, but it is important for the person with cancer or a family member to talk regularly with the doctor and the health care team about any pain so that the needs of the person are met. Read more about managing and treating cancer pain.
When to call for help
If you are caring at home for someone with cancer, ask the hospice or home care staff for guidance on when and whom to call for help. The following are some situations that require assistance from a trained professional:
Pain that is difficult to manage or relieve
Inability to take the prescribed medications
Signs of distress (pain, breathing problems, agitation)
A sudden change in the level of consciousness or a seizure
Situations that overwhelm the caregivers at home If the person is acting in ways you do not understand or showing behavior that you feel unsure how to manage, it is important to call for help.
Respecting final wishes
Many people with advanced cancer choose to prepare advance directives. An advance directive is a legally binding set of instructions that explains the kind of medical treatment a person wants and does not want if he or she is no longer able to speak for himself or herself. For example, some people nearing the end of life choose to not receive artificial life support, such as mechanical respirators or a feeding tube, and may request a do not resuscitate (DNR) order stating that the person not be revived if his or her breathing or heartbeat stops. Caregivers and others who care about the person may not always agree with the decisions outlined in an advance directive. However, having the person’s final wishes respected and followed is an important need for people with an advanced illness. As a caregiver, following the final wishes of the person you care for is one of the most important things you can do to help him or her die with dignity and peace of mind.
It is important to note that if someone has a DNR order, do not call 911 (or the emergency services number in your local area) if his or her breathing or heartbeat stops. Emergency personnel responding to a 911 call may perform cardiopulmonary resuscitation (CPR). Read more about DNR orders and CPR.
Organizing practical matters
Organizing practical matters ahead of time lowers some of the stress of caregiving and helps caregivers concentrate on spending time with the person they are caring for. The following are some practical tips that may help you organize your time and focus your efforts:
Make a list of people that the person you are caring for would like to have visit in the final weeks.
Although the moment of death cannot be planned, it is best to think about who should be present at or around the time of death. Decide whether a clergy member or other spiritual leader should be at the bedside and what rituals or ceremonies are important to perform.
Make a list of phone numbers of people to call after death occurs and ask a friend or relative to help make those calls.
Choose a funeral home and notify them that a death is expected in the near future. Most hospices will call the funeral home for you and inform them of the situation. Understand the person’s wishes for funeral and burial services, such as cremation.
Notify hospital or hospice staff of cultural and/or religious customs about grieving. This may include such things as a list of who should be present before and after the time of death, and any special customs surrounding washing, dressing, or caring for the body after death. Informing hospital or funeral home staff ahead of time can help ensure that they can accommodate the person's wishes and follow cultural practices. Immediately after death
When death occurs, the person's muscles will relax, breathing will stop, the heart will stop beating, and there will be no pulse. Even when death is expected, shock and disbelief is common. Hospice staff or the person's doctor should be notified within a few hours, but a natural death is not an emergency and medical personnel do not need to be called immediately. Many people find it comforting to take some time to sit with their loved one, perhaps talking quietly, just holding hands, or seeing their loved one at peace.
Help! I am Concerned About My Parent In When Your Parent Becomes Your Child I discussed the issue of aging parents that concerns all of us sooner or later. But how do you know that your parent is in need of intervention? Are you really seeing a problem or are you imagining it?
You see, most of us really don't want to see that our parents are beginning to have problems. Their arms have always been strong enough to hold us, their minds have always been sharp enough to give us the answers we were looking for, and we don't want to see that those times may be coming to a close. Most of the time our parents won't admit it either, and often get angry if it is suggested to them that they may be needing more help than they used to. Since it is hard to accept, and harder still to confront, many of us leave the issue as the white elephant in the middle of the living room. We know there is a problem but noone wants to mention it.
Ideally this will be discussed before it happens. Ideally, you will talk to your parents when they are still not having problems and you will come to a place where you and they have reached decisions about what to do "just in case...".
It is hard to bring the subject up but if you are still years away from dealing with their aging problems please do broach this important issue with them. Make notes. Sign and date the notes and have them do the same. Copy the notes and put the signed and dated originals away in a safe place. It may make it easier if there is ever a problem to be able to show them what was decided, show them their signature on it, and hopefully move ahead according to that plan. If there is ever a question amoung siblings or anyone else you will have, at least, those dated papers.
If you are already concerned read on: Signs Something Is Going On If you are feeling concern then you probably are seeing something. How can you assess your parent's ability to be independent without dragging them in to a doctor?
Here are some signs that they may need help: 1.Mom has always been a great housekeeper but lately the house has begun to be cluttered: This can mean alot of things, maybe she has been busy doing other things,maybe she is more tired than usual, or maybe she is becoming overwhelmed with the daily chores. Keep and eye on this and look for other signs, or signs that this is getting worse.
2. Dad is letting the bills and other mail pile up: Again, they become overwhelmed by tasks that used to be easy to deal with.
3.The checking account is messed up/bills aren't being paid: This is a troubling sign that your parent my be overwhelmed and not thinking as clearly as he used to.
4.Losing weight.: This can happen especially after the death of a spouse. Shopping, preparing food and cooking just become too much trouble. My mom was eating a carrot now and then, or a piece of celery, because it was easier. Another sign of problems is no food in the fridge, or food that is spoiled or old.
5.Wearing the same clothing. Poor hygiene: They either forget to change clothes, sometimes sleeping and wearing the same things for days, or they put on the same clothes every morning.
6.Inappropriate clothing: Wearing summer clothing in winter, going out without a coat, not wearing shoes (when they normally would), leaving off articles of clothing..all these things should be checked into.
7.Signs of confusion in the kitchen: Pots that are burned on the bottoms because they have been left to boil dry, water stains and mildew under the sink and in other places because water was left on and forgotten about, dishes that are unwashed for long periods of time, food left out...these are signs that your parent is at risk.
8.Forgetting appointments: Missing doctors appointments, forgetting to take medications, missing church when they have been regular church-goers may indicate a problem. My mom forgot about my daughter's wedding, and we had to call her and then postpone the ceremony for over an hour while waiting for her to get there. We did not see it as a problem at the time but looking back it indicated what was to come.
9. Just Acting Weird: This may be a hard one for my kids. Maybe I should say, acting weirder than normal! Odd conversations, signs of paranoia, accidentally taking too much medication, phone calls at odd hours, unusual fears and nervousness, all of these things may be signs that your parent needs help.
10. Depression: Familiarize yourself with the signs of depression. Many of problems mentioned here are also synonymous with depression. A doctor can more easily assess your parent for problems and how to treat them.
Now What? If you see any of these signs in your parents discuss it with them. Share your concerns and see what they say. Try to get them in to the doctor. However, if you can't get them in to the doctor, make an appointment with him/her and discuss your concerns. The doctor can point you to various agencies that can help, and can more closely observe your parent the next time they are in for an appointment.
Don’t let arthritis stop you from reaping the rewards of lifelong fitness.
By Camille Noe Pagán
Even if you have arthritis, it’s entirely possible to make the leap from couch potato to avid exerciser – and well worth the effort.
A 2008 study from the University of North Carolina at Chapel Hill evaluated the Arthritis Foundation Exercise Program and found that sedentary individuals with arthritis (both rheumatoid arthritis and osteoarthritis) who exercised twice a week for an hour experienced significant declines in pain and fatigue and improved their ability to manage their arthritis. In addition, a 2006 study in the Canadian Medical Association Journal concluded that exercise markedly lowered the risk of myriad health problems, including heart disease, cancer, obesity, diabetes, depression and osteoporosis.
So don’t let inexperience, inertia or arthritis hold you back. “Contrary to popular belief, there is never an age, skill level or stage of arthritis so bad that you can’t do something constructive for your mobility,” says Vonda Wright, MD, assistant professor of orthopaedic surgery at the University of Pittsburgh Center for Sports Medicine and author of Fitness After 40 (AMACOM, 2009).
Doreen M. Stiskal, PhD, chair of the department of physical therapy at Seton Hall University in New Jersey, agrees. “Most people with arthritis don’t exercise because they’re in pain – not realizing that exercise is a powerful and effective pain reliever. It eases inflammation, improves energy and promotes the flow of feel-good pain-relieving chemicals like endorphins.”
So what are you waiting for? Here’s your comprehensive guide on how to start – and stick with – an exercise program:
Before you lace up your sneakers, follow these steps to make sure you safely jump-start your new routine.
Check in with your doctor. Let your rheumatologist and general practitioner know that you’re going to start exercising. She may advise against specific activities because of your medical history, says Cedric Bryant, PhD, chief science officer of the American Council on Exercise in San Diego.
“Ask your doctor for specific suggestions, including how long and hard you should exercise,” says Bryant. “If she’s unable to do so, seek the help of a physical therapist or certified professional trainer who has extensive experience working with people with arthritis.”
It has become the baby boom generation’s latest and, in some ways, most agonizing life crisis: what to do when the parents who once took care of you can no longer take care of themselves. Raise your hand if you’re one of the 60-year-olds reading this who has one or more living 80-year-old parents.
Listen in on a group of middle-aged children of the elderly, and you’ll hear that even the most casual mention of aging parents is likely to open up a Pandora’s box of anxieties. These are stories told with tears, with exasperation, and sometimes, when they can take a step back, with laughter. Not funny ha-ha mirth, but more like the hysterical laughter we all experience at those moments when we’re forced to come to grips with the absurdity of life and our own helplessness.
Even if their parents are still doing fine, middle-aged children need only look around at friends and neighbors to be reminded that these anxieties will become theirs one day. Indeed, most of the children I spoke with in the research for my book, “60 On Up: The Truth About Aging in America,” actively worry about their aging parents, often well before their parents need any help.
I see it with my own 63-year-old daughter, who wants me — her 87-year-old mother — to be in touch when I leave town, even if only for a few days or a week, who calls when she’s traveling though she never did before, whose anxiety announces itself over the phone lines when we haven’t talked for a while: “Are you OK?” I tell her I’m fine, ask her to stop worrying. “It’s my turn to worry,” she replies.
She and her husband have regularly spent some weeks each year in adventurous travel abroad. Now, she’s reluctant to go away for so long and resists going anyplace where she’ll be out of reach for more than a day or two. When I tell her that her anxieties are overblown, that her fears are unfounded, that I want her to go and enjoy herself, she looks at me and says, “It has nothing to do with what you want. It’s what I need.”
It’s a response that moves me to tears, while a little corner of my brain thinks, “Yes, I know, but that’s your problem. It has nothing to do with what I need right now.”
When she read these words in an earlier draft of this article, she called. “I think you left something out here, Mom.” I’m quiet, puzzled, waiting for the rest, until she goes on to remind me that when she phoned to say they were back after their last overseas trip, my immediate response was one of great relief — “as if,” she says, “you were holding your breath the whole time we were gone. You actually told me that you were relieved and that you didn’t really like it anymore when I’m so far away for so long.”
I resist at first, wanting to tell her she’s making more of it than I meant. Then I remember the rush of unshed tears when I heard her cheery, “We’re home!” at the other end of the phone line, remember, too, how comforted I felt to know she was nearby again, relieved of an anxiety I hadn’t even fully known was there.
“But I also meant it when I said I don’t want my feelings about this to determine how you live your life,” I say.
“I know,” she says, “but that’s only because you think you always have to be the mom. I love you for it, but it can be a pain when I feel like I’m getting mixed signals and when you try to protect me when I don’t need your protection.”
Another reader — the adult child of another mother — to whom I sent an earlier version of this article, sends an email pointing to this passage and says, “It would be nice if you’d expand on what you do need. Parents tend not to say what they need, and we children are left to try to figure it out, which leads to problems when we make mistakes.”
These issues between parents and children, the mixed messages on both sides — children who say they want to help but who already have too many demands on their time and energy, parents who say they don’t need anything but clearly do — are an old story. It’s not news either that adult children have always worried about their parents, that they’ve always cared for them in their old age, and that the role reversal is inevitably a wrenching emotional experience for all concerned.
But the demographic and cultural context in which this takes place is vastly different now than it was a century ago. Then, few women worked outside the home, so someone was available to care for an ailing parent. Today, a changed culture combined with economic need has put most women in the labor force alongside their men, which means that there’s no one at home to take care of Mom or Dad when they need it. Then, life expectancy at birth was just over 48 years; today, it’s close to 80. Then, so few lived to 65 that there is no record of life expectancy at that age. Today, if we make it to 65, we can expect to live another 20 years. And one-third of those over 65 need some help in managing their daily lives; by the time they reach 85 (the fastest-growing segment of our population today), that number jumps to well over one-half.
The result: Middle-aged adults may well spend more years caring for a parent than they did for their children.
Those in their 60s and 70s, who looked forward to these years with their promise of freedom from the responsibilities that bound them before, are now asking: “When do I get to live my life for myself?” The younger ones, who at middle age are already stretched thin by their own financial problems — worried about how they’ll provide for their children’s education, whether they’ll ever have enough for their own retirement, how they’ll live the rest of their lives — are asking: “How can I do it all?”
No one wants to ignore parental needs, but unless there are financial resources well beyond what most families can dream about, how to meet those needs is a problem with no easy solution. For the children, it can mean bringing their parents into their homes and, among other things, dealing with a spouse’s grumblings about the intrusion in their lives, teenagers’ complaints about giving up the privacy of their rooms and coming home to Grandma or Grandpa after school – a tempest that sometimes strains marriages to the breaking point.
If there’s one word to describe the dominant feeling on both sides of the bridge that connects the generations at this stage of life, it’s “ambivalence.” “I love my parents, but…” That’s a line I hear spoken repeatedly as women and men struggle with the duality of their feelings — their love for their parents; their sense of obligation; their guilt that, no matter how much they do, it never seems to be enough; their difficulty in coping with their own needs, with their jobs, their families, their fears about their future and, not least, the inability to see an end in sight. The parents’ stories are the mirror image of their children’s. “I love my children, I know they want to help, but…” The words say they appreciate their children’s concern while they feel it as an infringement on their autonomy.
Children grumble about how hard it is to reason with their parents, about how they resist any change even when it seems clearly necessary. Parents complain about unwelcome intrusions, about being talked to as if they were incompetent children. “It’s what happens when you’re old. You lose all credibility, and people treat you as if you’re half brain-dead,” observes an 86-year-old father heatedly. “It’s damn insulting, and I don’t like it any better when my children do it. Worst part of it is, they don’t get it. They just write you off as being difficult.”
His 79-year-old wife agrees but speaks with more understanding of the difficult situation in which they all find themselves, welcoming her daughter’s caring while also resenting her interference. “I know she doesn’t agree with our decision to stay in our house, but that’s only because she wants us someplace she thinks is safe, so she doesn’t have to worry.” She hesitates a moment as if considering whether to go on or not, then adds, “I don’t know exactly how to say this, but sometimes I think the kids are selfish, too. I mean, I know they love us and want the best for us, but is it an accident that what they think is best is what will relieve them, whether it’s really good for us or not?”
An accusation that’s not without some merit, but one also that doesn’t take account of the complex and conflicting feelings both generations juggle. Looked at from the parents’ side, there may, in fact, be something self-serving in the way children push parents to give up their home, their cars, their lives, so that they can stop worrying about them. Some even acknowledge it. But step into the children’s shoes, and you wonder: Who’s selfish? Is it selfish of parents to insist on maintaining their lives and the home of a past they can no longer live easily without considering the price children pay?
True, parents didn’t count the cost, whether financial or emotional, when they gave themselves over to caring for their children. But parents chose that life. It wasn’t forced on them by circumstances outside their control, and the legitimacy of their authority to do so was unquestioned. But taking care of Mom and Dad profoundly interrupts the lives of adult children who have no authority to control or manage the situation unless their parents willingly hand it over. “I feel like I’m being torn to pieces,” cries a 48-year-old woman as she struggles to balance her care and concern for her 70-something parents who need help and don’t have the financial resources to pay for it.
Her parents’ response: “We just want her to stop nagging us and let us live our lives the way we want to.” I remind them that their daughter says they can’t afford to continue to live their lives as they have.
“That’s our problem,” her mother replies, hotly. “We’ve managed until now. We’ll manage again.”
It’s a no-win situation. Parents commonly resist their children’s attempts to intervene, but they are often in denial about the depth of their decline and can’t or won’t see what’s plain to others: They need help. If children back off from the conflict, their parents can fall through the cracks. If they don’t, parents are often resentful and difficult. “They think because their father died, I need them to tell me how to run my life — where to live, how to spend my money. It’s ridiculous. I love them and I don’t want to get upset and argue with them, so I finally just stopped listening when they talk. Sometimes when I know it’s one of them calling, I don’t answer the phone.”
It’s an upside-down version of the familiar passive-aggressive drama between parent and adolescent child: “Where are you going?” “Out.” “Who are you going with?” “Nobody.” “What are you going to do?” “Nothing.” Just as parents must decide when to intervene and demand answers, so adult children sometimes have no choice but to take control.
“My mother is furious with me because I insisted on moving her into an assisted-living place,” says a 70-year-old man mournfully. Then, his sadness turning to anger, “For God’s sake, she’s 89 years old and has arthritis so bad she can hardly move. I don’t think she’ll ever forgive me, but when I found her on the floor because she fell and couldn’t get up, there was nothing else to do.”
There is no right and wrong here, no black and white; there are only shades of gray in situations so murky that it’s nearly impossible for either parents or children to know just when it’s the right time to take a step, make a move. Children, who think they see the line more clearly, push their parents to a decision, mostly out of loving concern but also because they need some relief from the worry and the burden. Parents fight more tenaciously to hold on to what’s left, as each step of their decline poses another threat to their sense of self. They tell themselves they’ll know when the time has come; then one day they slip, fall and can’t get up. Or at some unseen, unfelt moment, they slide past the time when they were mentally capable of making a reasoned choice. For a disease of the mind doesn’t arrive with the drama of a broken hip; it travels stealthily, taking little bits and pieces as it moves through the brain, each one seeming inconsequential in itself until one day the person has slipped over the edge.
What to do? I have no easy answers. What I do know is that one of the great challenges facing both the nation and its families is how to take care of our parents and grandparents — a problem that is increasing exponentially as 78 million baby boomers have begun to move into the ranks of the elderly. In an article last month in the New York Times about the failures of Medicare — what it does that it shouldn’t do, what it doesn’t do that it should — Jane Gross tallies some of the social cost: “Right now, there are 47 million Medicare beneficiaries, costing a half trillion dollars a year, or one-fifth of the nation’s health spending. In 2050, the population on Medicare will number 89 million. How scary is that?”
Scary enough to push us to lift our voices for some radical change in the way healthcare is delivered in our nation. I know, I know. We’re living in a moment when the rise of the political right, and the consequent gridlock in Washington, has even made it socially and politically acceptable to propose the abolition of Medicare and Social Security as we’ve known them. But that doesn’t mean we must suffer in silence. Rather, we — both parents and children — have to make ourselves heard on behalf of the kinds of changes that will lift some of the strain from the backs of both generations. At minimum, a change in Medicare policy that would allow for long-term care, whether outside or inside the home, without requiring that the recipient be impoverished — a policy shift that would ease the financial anxieties of both generations and surely assuage some of their psychological anxieties as well. At best, a national universal healthcare system that, like those in every other Western democracy, would ensure healthcare for all Americans and wouldn’t break the bank, as our present for-profit system threatens to do.
Meanwhile, take a deep breath and come to terms with the reality that our new longevity is both a blessing and a curse — a blessing because we live longer, healthier lives than we ever dreamed possible, a curse because old age sucks. It always has, and it always will, because it is, by definition, a period of decline that takes a toll on those who are old and those who love them. The only difference now is that, because we live so long, our children suffer it right alongside us.
“This was supposed to be my time,” says a 75-year-old retired widower whose 94-year-old mother has been living with him for 13 years. “It’s hard not to think, What about me? I’ve had some heart problems, and I think about that and know that, well, you know, I could die anytime and I’ll never have had the chance to live these years like I wanted to.”
Mom has been wanting a lift chair. I kept putting it off because she wont be using her muscles to get up and down. But after Christmas we went to check on the chairs. With a prescription from the doctor, Medicare would pay for the motor. So we ordered the chair. All stores being closed for the 2 Mondays for the holidays, we didn't get it ordered until Jan 3rd.
Mom started saying "If they don't get it in, we will cancel the order and go someplace else and get a chair." I wanted to say 'Mom, it will take just as long" but I didn't, I just kept going and checking on it. It was exactly 8 days from the time we ordered the chair until the time they delivered it. Mom was just wanting her chair.
She is very happy. It's go the 2 pockets in the arms with a tray for eating. I am glad that she is happy.