Home Care or Institutionalization?

Posted on February 3, 2010

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Since “The Caregivers’ Foundation” has happened, a lot of people just open up to me. I think it is the realization that one who has gone through pain, will understand the pain of someone in the same situation. I don’t know if it holds true for everyone, but somehow, I do feel it is pain that has moulded me into an empathetic person.

A few days ago, Sylvester* read this article about my sister and me in the paper and decided to talk to me. He confided that his grand aunt had been moved to a home after she had been diagnosed by a form of dementia. The decision was taken by his mother. The reason was that she was becoming increasingly restless. She was wandering off, losing her temper with family members, becoming violent – oh you know the works. Sylvester recounted painfully a fight that this aunt had with her own sister who had come down from Australia. He said that the two almost came to blows. I smiled. This was common. And the anger that he felt with his grand aunt from Australia was justifiable, after all she was in possession of all HER faculties, right? But it’s not so easy. Even a person in charge of her/his faculties is allowed to feel indignant and absolutely stunned at the bizarre behaviour that their loved one displays! It’s an unimaginable thing to understand that someone you love so much has gone loony. And for a few moments, you tend to lose your equilibrium as well.

But the reason that Sylvester was talking to me was different. He said that his mom still feels guilty for having shifted his grand aunt into a home for the aged. Actually, his mom’s sister used to visit the grand aunt at the home regularly and his mom would go as often as “time permitted”. But a few days before the grand aunt died, they went to the home (Syl’s mom and her sister) only to find that their aunt was in a terrible state. She was smelling of urine and she hadn’t been given a bath for a few days. They were utterly disgusted and distressed but didn’t know what to do. They got the nurses to clean her up and laid her down on the bed. And a few days later, she passed on.

What do YOU think? Was it right for Syl’s grand aunt to be put in a home? Was it her fault that she was “losing her mind”? Anyway, here’s my experience and my take on the whole thing.

I asked Sylvester a simple question. Do you think your mom would have felt the same way had the home been taking care of her well and the last episode hadn’t happened? He said, “No. I think she would not have.” So I said, “I think it’s more the guilt that your grand aunt had been neglected.” Sylvester agreed.

When  my mom was sick, it was really tough on us. In fact, my sister gave up college in the last year because mom used to wander off from home. We’d lost her a couple of times, and to stop that she needed 24-hour vigilance. This is the 2nd phase of Alzheimer’s and it is maddening and depressing. The patient is neither in complete control of her/his actions and nor is she/he capable of understanding that others are just trying to protect them from harming themselves and other people.

I often thought about putting mom in a nursing home (relatives’ homes were out of question, they’d not take her, and we’d not let them, their attitude was bad enough) so that I could study or go out for a party or simply sleep through the night without getting disturbed. I didn’t want mom to live there “forever” of course, I just wanted to take a break from being her mom.

I think it is not so much about whether you keep your loved one at home or in an institution, but it’s more about how you do it. If you keep the person at home, but are burning out and not realizing it, you may cause more harm to the patient than good. You’ll end up yelling at the patient, crying yourself to sleep and feeling guilty and angry almost all the time. On the other hand, there is a danger of putting your loved one in an institution and completely cutting off from that situation. We all know horror stories about how families don’t want their loved ones back, right? I think it’s quite natural to not want someone back. It’s traumatic to deal with the illness, the change in the nature of our relationship with our love one, the loss of our loved one and most of all, the sacrifices that we might need to make!

Having said that, the best way to deal with the situation is an age-old method, but it works beautifully. Ask yourself, “If I was in her/his position, what would I have wanted my family to do?” The answer that you get (provided you do have a functional conscience) will be your path forward.

If you are a caregiver and contemplating about putting your loved one into an institution, I have just one suggestion for you – Do it with love and grace. This is your conscience checklist –

1. Am I really capable of taking care of mom/dad/sibling at home? Do I have the resources to hire a nurse at home?

2. For how long do I want to shift mom/dad/sibling into the institution?

3. How often will I visit her/him? Am I capable of making a visit several times a week? Once a week? Once in 2 weeks? Once in a month? (How often would I have wanted my family to visit me, if they’d put me in an institution?)

Every illness has an active phase. During this phase, caregivers feel stressed because they’re dealing with the prognosis as well as the daily realities. During this phase, it might be advisable to seek help from professionals for the patient. You can even consider hospitalization or institutionalization. But once this active phase passes, the patient will become more manageable. At that point, she/he begins to need only love and care. It might be good to keep your loved one at home if you can hire a nurse. In the case of Schizophrenic patients, the nurse may not even be required. In fact, being around family and in society, helps to keep another attack at bay. With love and support, patients are known to be “happy” for long periods of time.

If you do not have any support, you may have to put your loved one into an institution, but you can of course visit them several times a week, right? No support needed for that, I think. Let me warn you here, that sometimes institutions will be mirroring your attitude towards your loved one. If you don’t visit them often, the staff there may feel it is okay to not pay attention to a patient who is not getting checked on often. It’s wrong, but it’s true. If money could buy everything, would we not have bought physical wellbeing for our loved one? So remember, your responsibility doesn’t end with institutionalization, rather it begins there. You have to walk that extra mile to let your loved one know that you care, even if you can’t keep them at home with you.

To end, here is an inspiring story of a husband who had to put his Alzheimer’s affected wife into a home.

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Posted in: attitude, life, love