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DECISION MAKING
PLACING A LOVED ONE IN A PERMANENT CARE FACILITY
What can you do to ease the transition from home care to nursing home care?
For the vast majority of Alzheimer's caregivers, there comes a time when they can no longer care for the affected individual. They simply do not have the skill, energy, and support to provide round-the-clock supervision and daily activities tailored to the person's increasing needs. That's the time to take the final step in Alzheimer's care - placing the person into a nursing home. The decision to place a loved one in permanent care is often the most difficult decision the family will have to make and it is a decision sometimes accompanied by feelings of guilt and a sense of failure. Such feelings are natural, but it may be beneficial to talk through such concerns with friends and family or with members of a support group - perhaps even seek professional help.
Avoid crisis management - plan ahead.
Another source of comfort can be undertaking a full investigation and ensuring that the facility will cater well for the specific needs of your loved one - indeed, provide better care than has become possible in a home setting. Many places now have special areas catering to the specific needs of dementia patients. It is important to start investigating what is available locally very shortly after diagnosis. This will allow you to fully identify the choices and the possibilities, taking budgetary restraints into account. Planning early is the wisest course financially. It allows other family members to discuss their own budgets and come to a consensus about supporting the affected individual. It also allows time to arrange the affected person's financial affairs to ensure the best possible care during the later stages of the illness. Planning ahead saves the trauma of making a hasty decision in a crisis situation. Most facilities have a waiting list, and it is good to get onto the list as soon as possible. This will increase the likelihood of a bed being made available when your loved one needs it.
Visit and assess the available facilities in your district.
The transition into a nursing home is never easy, but the more reconciled you are to it, the better it is for your loved one. People with Alzheimer's Disease are easy to upset and agitate. The more upset you are, the more upset the affected individual is likely to be. It is important that you feel that you have ensured the best possible care and made the wisest decision. Much background work can be done by phone, but it is best to actually visit those facilities that you think may be suitable. Factors that you might like to take into consideration include
- distance from home
Is the facility conveniently located? Your loved one may live in a nursing home for several years. If it's too far away, visiting may be a problem. A good facility 10 kilometres away might be better in the long run than a great facility 100 kilometres away.
- physical layout
People with Alzheimer's Disease often become hopelessly confused and quite agitated in long corridors with dozens of identical doors. Look for visual cues, good lighting, individualised doors with distinctive colours and personal touches. Focus your attention on the rooms, bathrooms, kitchen, and day rooms rather than the reception area, which will be designed to appeal to visitors rather than residents. Check the bathrooms for grab bars and other aids your loved one needs.
- development of a care plan
Good nursing homes have individual care plans worked out for each resident. Find out about the process of developing the plan: Who is involved? Is the family included in the decision process? As your loved one's Alzheimer's Disease progresses, how will the care plan change? Ask about routine medical and dental care. Do health professionals visit the facility or are residents taken out to doctors and dentists? Can they be taken to their own doctors and dentists? Ask about medical emergencies. Is there a physician on call? Which hospital(s) does the facility use? Ask about end-of-life decisions. If your loved one has a living will and does not wish to be kept alive with heroic, technological measures, will those wishes be respected?
- staff training and attitude
You don't have to place your loved one in a facility devoted exclusively to Alzheimer's Disease, but you want a facility whose staff are experienced in dealing with the condition. Ask what proportion of residents have Alzheimer's. Ask if staff are trained to dealing with people who have Alzheimer's Disease. You know the problems your loved one has. Talk with some nurses and ask how they would deal with them. Notice the resident-to-staff ratio. The lower the ratio, the better the care (usually), but the number of staff is not the whole story. Pay attention to how staff interact with residents. Do they just sit at a nurse's station? Or are they involved with the residents? Do staff have questions about your loved one? Staff who inquire about the person's likes and dislikes, abilities and problems will probably provide better, more individualised care than staff who treat everyone the same way. Finally, pay attention to how staff interact with each other. Happy staff are generally a good sign of a well-run facility.
- hygiene and cleanliness
Use your nose. In facilities where many residents are likely to be incontinent, some odours are almost inevitable. However, they should not be overpowering. See how the staff deal with incontinence? Catheters should be a last resort. As you look around, only a few people should have catheter bags attached to their beds or wheelchairs.
- activities and community interaction
Find out about the daytime program. Do residents watch TV all day? Or does the facility have organised activities? People with Alzheimer's Disease are generally less agitated, and require less medication and physical restraint, in facilities that have programs of activities: music, exercise, bingo, dancing, games, etc. Look for community involvement. Do clergy, students, and outside volunteers visit the facility? People with Alzheimer's Disease don't do well in crowds of unfamiliar people, but some variety keeps them interested and helps prevent behaviour problems.
- visiting policies
Find out when can you visit and if there are places where you can have any privacy with the resident. Can you take the resident off the grounds? The more "open" the facility, the better. In facilities that severely restrict visitation, you wonder what goes on when visiting is prohibited.
- behaviour problems
Are there written guidelines for staff in dealing with behaviour problems? If so, do they seem to be followed? Ask what behaviours the facility can not manage and what happens when they occur (e.g. belligerence, combative behaviour, wandering, screaming). Under what conditions might a particularly unruly resident be expelled? Look around and see how many residents appear to be restrained. Sometimes restraint is necessary, but only a small proportion of residents should be restrained or sedated. What are the medication guidelines? Ask what proportion of residents get medicated.
- costs
Get all information about fees in writing. What is included in the base fee? Are there any "extras"? Are fee increases possible? How are fees to be paid?
The transition can be traumatic for both carers and Alzheimer sufferers.
The actual move is often more traumatic for caregivers than for affected individuals. Some people with Alzheimer's Disease resist nursing home placement, and accuse their caregivers and families of heartlessness. The more ambivalent you are about the placement, the more this is likely to hurt. Just remember: You're not heartless. You're doing what must be done. There is some disagreement about how much the move should be discussed. Some Alzheimer sufferers who took an interest in nursing homes early on, or who still have enough cognitive function to know what's happening to them, may feel better about being informed. Others, who have more advanced disease may be incapable of understanding the transition, are better left uninformed. In general, either tell people the truth, or say nothing. Don't consciously mislead by saying you're "just taking a drive," or "just going for a visit".
Once the person has moved, try to visit often during the first few weeks. Allow time for your loved one to adjust to the new surroundings. People have different adjustment periods depending on who they are and how severe their Alzheimer is. Remember that you too will have some adjusting to do. Give yourself time to make that adjustment. Initially, most people who trade daily caregiving for nursing home placement feel a combination of relief and disorientation. Alzheimer care is so consuming that despite your best efforts to maintain friendships and other activities, you're quite likely to feel lost for a while, disconnected from reality beyond Alzheimer care. Visiting also helps you work out your own adjustment to the new situation and reassure you that you're still connected to the person, and still providing some care, even as you withdraw from full-time care.
Regular visits can be therapeutic for all.
As time passes, continue to visit. As the disease progresses, and your loved one no longer recognises you, visits may become painful, and seem pointless. As the disease progresses, the affected individual may think you are someone else. Don't correct or argue. Just play along. Try to stay in the moment. Alzheimer experts urge family members to keep visiting because even people with severe dementia seem to gain reassurance from the presence of family members. During visits to a severely demented loved one, it's often difficult to figure out what to do. The person can't do much, and over time, remaining abilities fade. Consult with staff about what the person still enjoys, and do those things. Take a walk together. Share a meal. Listen to music. Or simply sit holding hands.
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