Coping with Dementia [Alzheimer's]

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I am no expert by any means, but I have very quickly picked up on some dos and don'ts for when dealing with those with a form of dementia and their families from recent encounters from my experience with Papa. These are my thoughts and thoughts alone! Not one of medical professionals, not my family members, just mine. Mine and mine alone.

One. Don't judge and say something ridiculous like: "I just talked to [your loved one] for a few minutes over the phone and it didn't seem like there was anything wrong with him/her". Thanks, I'm glad you came to that conclusion in the two minutes you spoke to him/her. How about being grateful, that alhumdulillah, there are still normal moments around.

Just think for a second [or ask a direct relative if just pondering over it won't be enough] what it feels like for an immediate family when [the loved one] cannot recognize them, or know where they are at the very least.

We cherish those moments where everything seems right with the world, and those are the moments that get us through the difficult ones.

So far in our case, alhumdulillah, most "days" run smoothly for the most part. It's the evenings and nights that pose the challenge in more ways than one.

Two. Yes, I understand what [your loved one] is saying doesn't make sense sometimes. Deal with it, and let it go. Don't remind him/her that s/he is wrong or correct them. Play along. Say nothing if you must, but please for the love of God don't make [your loved one] think harder.

Three. Don't judge the family for what they say to [your loved one] to ease their mind. Chances are, no scratch that-- I'M ABSOLUTELY POSITIVE there is a reason behind it and they know better.

Four. If  you are having a conversation with [your loved one], keep it simple. Enough said.

They don't need to know a whole life story that will probably confuse them later. And they certainly don't need to be put through a [political/personal debate/argument]. Not necessary. Chances are some parts [or bits and pieces of many different conversations] will stick in their mind and come back later out of context. Not to mention that it's not good for them to be over thinking either. 

Simple is good.

Again: these are my thoughts, and thoughts alone about my experience. And they definitely don't apply broadly to every person with dementia/Alzheimers/Sundowning Syndrome.

Everyone copes differently. What works for me? Writing my thoughts and sharing experiences with my family who get it simply because they are experiencing it too. It's not something that is easy to explain. Chances are you have heard of someone with Alzheimer's, but until you experience it first-handed... it's unimaginable.

I don't know if it makes sense or not, but my love/admiration for Papa has grown even more. I'm blessed immeasurably to have so many fond memories of/with him that I cling to on difficult days. I just came back on the 17th from Virginia after spending a week with him and unfortunately had several reminders to cherish the moment. That dementia/Alzheimer's is ugly. I hate dementia with all my heart and soul, but love Papa with every ounce of me.

P.S. Twelve days until my parents and I leave for a trip of a lifetime, inshallah... for hajj! More on that later.

Dementia

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"... among you is he who is returned to the most decrepit [old] age so that he knows, after [once having] knowledge, nothing." [22.5].

Dementia. I don't know whether it's nice to hate something, but I do. I hate dementia. With every ounce of me.

It's taken away my maternal grandfather mentally from us, and that is something that breaks my heart. The signs were there for so long, but I can't begin to explain to you the rapid changes in just one month's time. You just had to see it to believe it. I don't think I would have believed it if I wasn't experiencing it in front of my very own eyes about someone so near and dear to my heart. For someone with so much worldly knowledge and experience, to now suddenly succumb to something like this and so rapidly... I can't put into words how much I detest it.

I don't say this because our family can't handle it. That couldn't be further from the truth. Each person in the immediate family has stepped up their game and done more than their share. And done it because they want to.

Even when in your heart you already know [and we knew], when it was finally confirmed by medical professionals: it was so hard to digest and believe. Or even fathom. How could this be?

This too is a test from Him above, and together we will conquer it. It hasn't been easy, and I know it won't. But for someone that I have looked up to from day one? I would do anything I possibly can for him.

In some ways, it truly is like having a newborn/toddler around. You learn to have patience, and sooth their mind. You can't leave them alone at all, and your senses need to be at the top of their game 24 hours a day. Yes, even at night when sleeping. You do things for them, and help them with other stuff. They lose their independence and they become dependent on you. Worse, they feel like a burden. How in the world do you explain to, no scratch that... not just explain, BUT show them they are anything but? We would go to the moon and back without a second thought.

And just like when a child's toy is broken and they bring it to you to fix, you wish you could fix this for him just as easily. But you can't. It's broken and we can't do anything about it. We can, only, help him physically, but that will never seem to be enough.

Amongst the family we have been talking about how so often we remember in our prayers our physical abilities, but how often do we pray to retain our mental abilities? Each part of the human body, plays such an intricate role and together makes the human body whole. Even with one deficiency, it's as if the whole person is effected.

I've thought a lot about dementia lately, and every time I see Papa react a certain way, I wonder if he feels it. If he feels confused or senses something isn't right. We, obviously, know things aren't right. That he is confused to say the least. But we can deal with it. But I hope to God that to Papa, inside, he doesn't sense that.

I pray to Allah SWT to make it easy on Papa. To give his mind peace. To give us strength to take care of him in the hardest of days. And that we continue to do it whole-heartedly.