5 Things You ‘Know,’ But You Don’t Know
When I was a kid, and I heard “adults” saying: “Oh, they grow up so fast,” I probably rolled my eyes. I mean, how obvious can you get, right?!
Now I have two sons – both in their early 20s. Now I know what “they grow up so fast” means.
Similarly, I didn’t need my dad and grandma to get Alzheimer’s Disease to know that “dementia is bad.”
But it’s a bit like “they grow up so fast.” Sometimes, the things you’ll nod your head (in agreement) to, don’t really sink in until you’ve had a certain amount or type of experience.
So, here’s what I’ll do in this video. I’d like to list five (5) things that probably seem so obvious that I don’t think I ever would have denied them.
At the same time, from where I sit now, I realize that I didn’t actually appreciate the full significance of any of the five until I became the daily caregiver for my dad around 2008.
(The video version of this presentation is available on our YouTube channel.)
My dad died in 2016 from complications related to his Alzheimer’s. I have had several years to decompress and reflect on my family’s experiences with that dreaded disease.
So, I don’t say that just being my dad’s caretaker illuminated my mind. And I won’t pretend that merely listing these things for you will illuminate yours.
At the same time, I feel like encouraging you to slow down and maybe meditate on these things might be worthwhile. So, okay…
- Dementia can change your loved one’s entire personality.
If, pre-2008, you’d have asked me: “Can Alzheimer’s alter personality?” I’m sure I’d have said, “You bet.” Nevertheless… Here’s what I thought when I started caretaking.
I thought my dad would continue to be the same extroverted, happy-go-lucky, laid-back person I had always believed him to be. – just with increasing memory problems. It took months – and countless frustrating, tearful, and sometimes (frankly) scary interactions – to learn that Alzheimer’s had flipped his personality. Almost all my dad’s traits that I just listed literally turned into their opposites. He was withdrawn and isolated, combative, agitated, etc.
Now… a case can be made that all these “negatives” had always been there, deep down. Everyone has a “dark side,” kind of thing.
So, maybe, for most of his life he was just really good at hiding or restraining those parts. And, maybe, when he got Alzheimer’s, he just couldn’t or wouldn’t hold back any more. Regardless…
What you “get” – when caring for a dementia-afflicted loved one – is often quite different from what you’re used to, what you expect, and especially what you hope for. So, be prepared for anything! Or, to put it another way, realize that the person you’re dealing with – while they may resemble the one you’ve known and loved your entire life – might act like a complete stranger.
- Being a caretaker can make you feel really depressed.
Again, is this a surprise? Even people with no experience with Alzheimer’s probably know that it’s a horrible – and terminal – disease. Watching a loved one deteriorate is depressing.
But I thought that I’d at least feel as if I were doing something worthwhile by helping my dad.
And, don’t get me wrong, it was worthwhile, objectively speaking. In hindsight, I do cherish the fact that I was present for and with my dad.
Subjectively, though, when everything was going on, I felt miserable. Caretaking frequently felt futile and useless. And I felt physically sick much of the time. Maybe it’s just me.
It wasn’t just the understandable fact that my dad didn’t appreciate what I was doing. It was that he resented and actively resisted me. The whole thing was a fight practically from day one.
I locked the doors from the inside. I hid his tools. I disabled the car and – ultimately – pushed his long-time doctor to petition the state to get his driver’s license revoked. I was the enemy.
I knew that the steps I took had to be taken. But it was also painfully obvious my dad was being systematically cut off from all the things that gave him freedom and that he always loved to do.
I tried to remind myself that his disease was really to blame – not me. But that didn’t stop me from being overcome with guilt and regret. I’ve gotten more into all this in a dedicated video.
So: If being a caregiver makes you feel awful, you’re not alone. I felt horrible.
And, on the wavelength of things I didn’t fully know: Know that your life – and the life of your loved one – may be permanently changed. Relatedly…
- You will need to take breaks.
Not taking a break can lead to serious consequences – not least is your own emotional or physical breakdown and burnout. Who would deny it?
By the same token, you can’t exactly leave an Alzheimer’s sufferer by themselves for any length of time. It may be difficult for you to prepare and eat meals in peace or to get an uninterrupted night’s sleep, let alone to take a mini-vacation. And this can go on for years.
In our case, my dad would live nearly eight (8) years after his diagnosis. That’s a long time to be someone’s 24/7 caretaker all by yourself.
So… how are you going to take those needed breaks?
As I’ve mentioned in other presentations, if you have no able or willing family members to relieve you from time to time, or in an emergency, then you may have to turn to professionals. Adult daycare, home-care providers, and (what are called) respite-care specialists can all play rôles, here. But, however you get help, you need to make sure that you take care of yourself.
Ultimately, a nursing home or other long-term care facility may be the only game in town. And on that note, try to more fully appreciate that…
- Your loved one may end up in a nursing home.
And when I say “end up,” I don’t mean to suggest that it’s inevitable. I don’t believe that.
And, in my case, I don’t mean to refuse responsibility for the decision to get him admitted. It was my choice.
But, honestly, early on, I did a lot of “ostriching.” If I had seriously faced the fact that a nursing home was a possible – or eventual – outcome, I’d like to think that I would’ve planned for it.
I’d say: “I would have planned better.” Except, to be frank, I didn’t do any real planning at all.
No one in my family wanted to think about dad being in a nursing home. – including me.
And I put off any serious thought about that option until I was totally exhausted with caretaking. By that time, our options were severely limited. Even among homes we could “afford” (quote, unquote), our top two (2) choices were unavailable. They both had year-long waiting lists.
And because I was emotionally broken when I started to look into various homes, it’s likely that I didn’t investigate as thoroughly as I might have. – or, quite possibly, as I should have.
Since you can’t reason well when you’re under duress, my evaluation of the options – and my decision – were probably compromised also. It would have been healthier for me to admit, from the get go, that I couldn’t really rule out nursing homes.
If I’d have done only that, our decision-making process would have gone much better – and, possibly, yielded a better outcome. To top it off, I didn’t fully appreciate that…
- A nursing home isn’t a perfect solution.
Again, who would say otherwise? For one thing, it’s obvious – at a general level – that when we’re deciding between two or more options, each choice will have positives and negatives.
Duh. Right? In hindsight, it seems pitifully naïve of me to have ever hoped that a nursing home would be “the answer to all my prayers.” Of course, nursing homes have their own drawbacks.
Some of these disadvantages are both major and pretty obvious – like the fact that they have a staggering, current average cost in the vicinity of $8,000 per month.
Another serious downside – one that I intend to make the focus of its own video – is the arguable tendency of nursing homes to over-medicate their patient-residents. I don’t want to go too far down this rabbit trail right now. Let’s just say that – in my opinion – my dad’s nursing home medicated him just to make him docile.
But it was hard for me to understand all this when I was at the end of my rope with homecare. The situation became seriously unmanageable. And I became desperate for an escape route.
So, at the risk of concluding with another one of those aphorisms that’s easy to say, but hard to appreciate or do… Try to stay as clear-headed as possible.
From a practical standpoint, try to have open and honest conversations with every interested person in your circle: from family and friends to doctors, lawyers, and so on.
Solicit advice from as many reputable sources as possible. And run your options past your family “think tank.” Try not to exclude any possibilities.
In two (2), planned, follow-up videos, I’ll expand on some of these ideas and explore related topics like “things I wish I’d known when I started off caretaking.” In the very next installment, already written, I’ll suggest three (3) things that I would do immediately, if I had to be a caregiver all over again.
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Either way, though, I thank you for watching.
And I wish you all the best for your caretaking efforts.