Caregiving for in-Laws with Alzheimer's

Hi,

First, our situation at home. We've been married for 6 years, have a 3 year old son and live with my FIL and dog. About 2 years ago, my FIL fell seriously ill and got diagnosed with Alzheimer's disease as well. As of today, we need full time nursing help at home so he can be taken care of.

I'm writing this post to get an understanding of how people in a similar situation especially in India manage. Alzheimer's was a disease you only heard about but having it happen at home has opened my eyes to a lot of truths, some of which are quite uncomfortable to deal with ...especially when you realise them about yourself.
I feel terrible watching a man who was independent now relegated to doing not much more than watch tv all day and wait for his grandson to play with. As a disease, while it has impacted him, he still remains sharp and likes keeping up to date on the news etc.

Having said that, our lives now completely revolve around first ensuring he is happy- food/company/outing wise..then ensuring our son is well taken care of..leaving us no time/space to care for ourselves at all. The nursing attendent does help, but for my FIL having someone at home cater to his needs means she is always at his beck and call...tiring the nurse out and leaving us with a constant churn of nurses..which not only upsets our daily life, but also him as he keeps needing to get used to a new person. In addition, the constant change has taken a toll on my toddler as well.

To add, my FIL's memory is not as steeply declined as they typically portray, especially on a day to day basis, however, he is unwell enough to not be able to function independently - will not remember to switch off gas/doesn't remember things told to him etc. Behaviourally, though, there has been a vast change in him...both as a function of the disease and as a result of the increasing lack of independence.

Over the last 3 years of caring for him, I have realised that caring for aged parents is as difficult or more at times, than caring for a toddler. Not only do you have to parent a parent, you have to deal with being called ungrateful and selfish too, because they cannot do whatever they want to.

Now I wonder if a home for the elderly would be a good option...not just for me but for him too. These are why I think ageing in a home, when the alzheimer's isn't as advanced will be good for him:

a) Access to a social circle. Since he is close to 80, with both my husband and I being pulled in multiple directions, the only social interaction he gets is with the maids/nurses, my son or random strangers he meets when we take him out usually once a week to a restaurant or a movie.

b) A place geared to take care of others in a similar situation and therefore better equipped caregivers. My husband works long hours and when he is home, he is torn between catching up with dad, wife and son. Add to that the fact that dad is really unhappy with life right now. Add to that, the fact that we are not trained caregivers, I am aware that we might not be caring for him as well as someone else could.

c) Bulding better relations all around. Right now, the situation at home is such that everything is a tussle..from what he needs to eat to how much, If we don't monitor constantly, he will hold food in his mouth and spit it out when no one's watching. He will hide medication that is given to him unless we personally put it in his mouth and ensure it is swallowed. He has no sense of personal space and will suddenly untie and retie his lungi anywhere. All this plus a stubborn disposition meaning only a scolding gets anything done. Rinse, repeat everyday. In the middle of all this, we (mostly me) end up being the strict parents ensuring discipline resulting in a miserable FIL who keeps thinking abouthow unfair we are being to him. Add to this, my 3 yo observing and learning the way to treat elder people..no matter what we teach him. I feel putting him at a distance where we will see him regularly, not a authority figures, but as family, will not only ensure his well being physically, but also emotionally. Plus my child will learn better ways to engage with him.

d) Lastly, it will give us much respite as a family. We have struggled with caring for 2 toddlers at different ends of the age spectrum and ended up not doing justice to either. Our outings as a family are so centered around what my FIL will be able to manage, that we don't have a mental/emotional space or energy to creating such spaces for our child. Thankfully, he is a very happy go lucky child, but I wonder how long will he do without..and more importantly should he have to at all.

We have thought of cons as well..but the biggest factor is my husband's fear that he is palming off his father for his selfish reasons. I disagree with that thought because I think it's like the decision to put a child in school/hostel. The child may not always like it, but we do it for their well being..and I truly think my FIL deserves better after all the years he spent giving my husband a good upbringing and life than an unhappy home and a place where he is looked after physically but we are unable to provide him with so much more that he needs.

Any thoughts from any of you, espcecially people living with Alzheimer's patients at home will be welcome.

Thanks for reading...

 

Reesha, Shobhamma, Thank you so much for responding. Reesha, he does still have a lot of his facilities intact so distracting him doesn't work and instead makes him even more upset since he perceives it to be an insult to his intelligence!

Shobhamma, thank you so much for the various links, I will look them up. I was aware of nightingales and the day care option is definitely on my mind. The others though, I had no idea about. Thank you also for understanding.

Anyone else in a similar position is more than welcome to share your experiences. Thank you so much.