What Should We Do With ‘Them?’
Just in case you have not figured it out already, caregiving for a loved one with any form of dementia is all-consuming. It is emotionally devastating. It is physically exhausting. It is often without appreciation. It is demoralizing. It often comes with no other family members offering their time or support to the primary caregiver.
Little wonder, that one of the biggest topics in the Dementia support groups, where I offer advice, is whether or not to put the loved one into a care facility. This is very complicated, quite costly, enormously guilt-creating, and at times a tremendous disservice to the patient. This does not necessarily mean that this decision, is avoidable.
Incredibly kind, loving family members quite frankly become exhausted beyond human limitations when caring for their loved one. It matters not if it is a spouse or a parent. It is even worse when a parent must care for an adult child with early-onset dementia. This is a grueling responsibility.
Thedementiadiary.com was created to share this experience with you, simply because very few people will do so. If we do not discuss it, how will you understand?
There are many reasons to consider looking for a residential facility to care for a loved one. Some are perfectly valid. As an example: How do married, working adults with young children then find time to care for a parent or in-law in their home, who has dementia? It is inevitable that both their marriage and their children will suffer from doing so. This is an especially important place for us to begin this discussion. Many moral issues arise. Is the remaining life of the person with dementia more important than that of the other family members? Is it fair to be expected to devote one’s self to a parent at everyone else’s expense? Where is the moral arbiter who can give us absolution when we make such a momentous decision? What if we make the wrong decision, how would we live with our regret?
There are so many variables in every family equation. There are massive differences in parent/adult child relationships, just as there are in husband/wife relationships. What was the health of the marriage before the onset of dementia and its attendant illnesses? Was Grandma or Grandpa adored by their now adult children? What if they were abusive or neglectful parents when raising the very children who are now expected to care for them through thick and thin and until the end of their days? What of relationships which soured with time? Parents who did not speak to their own children for many years, and yet have no one else to care for them… spouses who have resentments long-standing from a disappointing marriage, now expected to give up their own health and quality of life to care for their mate.
These are examples of the emotional issues which one must face when considering placing a loved one in a care facility.
There are some unfair elements here, as there are elsewhere in life. The less money that the patient has, the fewer people willing/able to contribute to their care, the less options become available. A wealthier individual or family may be able to keep their loved one at home in the worst possible circumstances, if they have the funds to hire caregivers around the clock to relieve the family from their massive burden. Even the wealthy however, often are unable to handle the severe physical issues which may accompany one of the many forms of dementia or other serious condition. Then, they too may decide to look for a residential facility.
For those who do not have generous resources, the scenario for long term dementia care is a bit more complicated.
Care facilities are very expensive to run. In addition, they expect to make a profit! As a result of the vast numbers of people who are affected by dementia, care homes are popping up everywhere to take advantage of the financial opportunity. That does not mean that they are all qualified to do so.
Most governments will help you to pay for the placement of a loved one, but only after it has been proven that all their assets have been liquidated. Hence their home will either be sold or signed over to the government. The patient’s bank accounts will be attached, as will be their pensions and their social security payments. Essentially, all their worldly goods and the inheritance they hoped to share with their family, will disappear. If that does not supply sufficient funds, most governments will work to come up with assistance through the medical and social services that they have in place. This of course does not ensure that you will have a fabulous-top-of-the-line care facility. But you should then have access to care somewhere outside of your home. You will be responsible for visiting different facilities to see what they offer and what they charge in fees. Be advised that one of your first steps must be to acquire power of attorney over the family member’s assets. I would suggest meeting with an elder-care attorney to get more guidance.
For individuals without serious memory loss, there are assisted living facilities into which they can move. As the name implies, the resident must be able to care for themselves and understand when they actually need assistance in order to request it. Their meals will likely be provided, but if they forget to go to the dining room once they no longer know day from night, they would not only be at risk health-wise, but would no longer be suitable for an assisted living situation. They can thus be required to move out of their apartment if they cannot function sufficiently on their own. If their comprehension declines and their depression or anger issues increase, without proper medications, no Assisted Living facility will be willing to deal with the patient.
One might think otherwise; aren’t they supposed to help us? Some will, some won’t. Some facilities have different wings for people in different stages of dementia. In that case, if you are satisfied with the care on offer, it may be possible to move your loved one within the same facility in order to receive more assistance as required.
One of the side effects of years of the Corona virus has been a decline in the availability of health care workers. Many qualified staff members went on to find other careers, as did those in the hotel or the restaurant industry. Those positions had to be filled promptly, and from the reports I have received, many nurses or aides in these facilities have very little background in nursing at all. They may not be able to recognize infections in patients or that medication changes are required. The new staff may not be sufficient in numbers for the volume of residents, whom must be bathed, dressed, fed three times a day (plus interim snacks), given medications frequently, possibly diapered, and entertained. A home of quality will handle all of these responsibilities. Many are lacking.
If you do decide that you can no longer care for a loved one in your home, it is advisable that the facility you select for them, is close to where you live. It is critical for their care and possibly their survival, that the staff is aware that there are family members watching that the care is of a high standard.
It is important to stop-in unannounced to be sure that their public relations brochure was an honest advertisement of the services that they actually provide. It has been widely reported that patients who have frequent visits from family members, receive extra attention. Those without anyone paying attention to their care, often decline rapidly.
The choices of care facilities will depend greatly on the city where you live, the funding available on your end, and the social services provided by your government. I cannot advise you on any of these, as everyone lives in different countries, cities and towns across the globe. An attorney who specializes in the elderly, and a local department of social services can advise you further.
Dementia patients who are sociable and enjoy the company of others, will likely make new friends in their new environment. Their transition to a new home will likely go well. If the home offers lectures, entertainment, art, crafts, singing, exercise etc., they will have much to keep them busy. On the other hand, if you see that all the patients are in their rooms 24/7 with no contact with one another, or plopped in front of a television for an entire day, you will need to be more thorough in your assessment. It is not at all unusual for those individuals to become severely depressed.
It is my highly unqualified opinion, however, based on cases that I know of personally, that patients who go into depression in their new environment will not live very long as a result. This too is a heavy burden for one to bear when making the decision to place a patient away from family.
Depressed patients will stop eating. They will not want to drink. They will fight taking their medications. They will see no purpose to living if the quality of their life is so reduced and there is no one who loves them to share their days left on this earth. I am constantly shocked to discover that patients who are depressed in these situations, have not immediately been given anti-depressant medication by the doctors-in-charge, to help relieve their emotional state. Please check that the facility you select has full-time doctors who will attend to your loved one in such a situation.
When we keep a loved one with us at home, we can watch how much they eat and how much they refuse. We can change their diet to please their palate. We can entertain them with games, television, music, and activities. We can take them out to a meal or to a movie. We can invite friends to come visit with them. We can take them out for fresh air. We can keep them clean and enable them to retain their self-respect. We do this because we care. We want the facility we chose to care about them as well. Still, it would be naive to believe that they will receive the same attention in an institution, as they would at home. If your loved one is extremely demanding and requesting attention every few minutes, this need will not be met by the staff who are probably over-worked and under-paid.
Thus, we come full circle, back to the reasons, the relationships, the financial aspects, and the stress which has brought us to this crucial moment decisions must be made.
It is easy to judge others whom we deem to have made the wrong choice. It is wholly unfair to do so. In writing about all of the issues involved, I hope that those who might not have seen what goes on behind closed-doors, will now realize just how difficult and heart-wrenching it is to bear the responsibility for the quality of the remaining life of another human being.
There is not one among us who would want to make these decisions, and yet many of us will have no option. Hopefully, all that I have shared will help you or your loved ones, to do so with the “wisdom of Solomon.”
