Beware of Snake Oil, But Remember Love

I have not posted a blog entry in three weeks. I hope at least a few readers missed me.  Before I get into anything else, there is something I feel I must address.

After posting my blog, comment messages or questions are sent to me via email. They are plentiful and much appreciated. However, there are often enough to nearly fill my inbox. Mostly they are from someone named "Kate." My last post brought me about 20 or so of the same email. It is from someone offering their testimony about how her husband was "cured" of dementia due to an herbal supplement.

This infuriates me!  Not because, they fill up my mail box, but because my research convinces me to believe the treatment is nothing more than a snake oil miracle "cure" that does nothing except cause you to spend money. This is not the only promised cure. There are many floating around out there. 

I will not say there is no use for these treatments. I am sure some of the supplements offer a modicum of health benefits. I am sure, however, that they will not cure dementia.  You can go directly to the FDA website and search for dementia cures and read their warnings. I prefer this site that is easier to understand.  https://www.alzforum.org/news/community-news/dementia-researchers-commend-fda-crackdown-supplement-hype

Perhaps the person who keeps filling my mailbox truly believes what she is saying. Perhaps she doesn't and is not even a she. I have no way of knowing. I do know that before starting any supplements or regimens, you should carefully research it for yourself and definitely discuss it with a qualified physician. Also bear in mind that supplements do not go through the rigorous vetting procedures that prescription medicines do.

If anyone has read any of her comments on my blog, please know that I do not endorse any products or treatments for dementia. Actually, it is the exact opposite.

That said, why have I been missing for a while? Simple truth? I have just been too exhausted to think, much less type out words that would make any sense at all.

Our caregiver/companion (I really don't know what to call her except, maybe, my salvation? How about, for now, I call her Peg?) broke her shoulder months ago and finally had it surgically replaced. She showed up here to work less than a week after her surgery. I swear they should study her healing powers. There really was not much she could do with her dominant arm in a sling except remind me of everything I needed to remember (what was needed to be done vs. what could wait for her, where I needed to be and when, and help keep my husband as calm as possible."

She has voluntarily stayed overnight a few times so that I could get a decent night's sleep. I swear he knew she was here because he slept through those nights each time she stayed. She convinced my sister to take me out of the house for a day for a break. All caregivers should have the instincts this woman has. I do not go out any more than necessary because if I do, I find she has cleaned at least a couple rooms of the house... all with her left arm!

Other than doing a little of what Peg normally does, I have no clue why I have been so exhausted and weak. I started taking an iron supplement and extra B12 since both of those have tested low a few other times and it has seemed to increase my energy level a bit. As fate would have it though, once I started feeling a bit better, I came down with a cold. 

This made me face reality. My FTD continues to worsen. Somehow, I had convinced myself that I was staying at an even keel so that I could care for my husband with his Alzheimer's Disease. Wishful thinking, I realize that now. At the same time, his dementia is worsening. I am fortunate, that for the most part, he is still easy to get along with. Except for bathing of course. He still hates that. Afterward, he says he feels better, but he just can't make the connection that it is the bathing that makes him feel that way. I guess that connection in the brain no longer works. This is such a common thing with FTD and, I guess, with all dementias. As I wrote before, switching to "wet" sponge baths has helped immensely. He does not mind the water when it is done this way.

Peg is working with me to not jump as soon as he asks for something or looks like he wants something. Included in that is to not help him do things he is still capable of doing. For instance, it takes him a long time to dress himself and it usually isn't in the best of clothes (I think he believes holes makes everything more comfortable) but what does that matter. I do make sure to remove his dirty clothes from his room at night or he would wear the same thing for weeks, even the underwear. Yes, it is gross.

Until she pointed it out, I had not realized that I was doing nearly everything for him. It is sometimes difficult to watch because I know he is struggling, but she has me convinced that it is good for him to be able to do a few things himself. When I thought about how much I insist on remaining as independent as possible with my FTD, that totally makes sense to me now. Now, I often ask him to do really simple things... like opening a box or setting a dish in the sink. He now will, occasionally even take the plates out of the dishwasher when he see me start to empty it.

One thing that continues to amaze us is that he recognizes all of his medications. He takes 13 pills in the morning. None are for dementia, obviously. Most are for his heart and blood pressure, the rest are vitamins. If I have made an error filling his pill boxes, he catches it. I cannot even do that for my own, yet he can do it without fail. Because I struggle with it, we have switched pharmacies and will soon be using pill packs to eliminate me filling the pill boxes. I have confidence that he will still be checking them every day.

Caregiving can definitely be exhausting and leaves one with very little time to do the things that were enjoyed prior to becoming a caregiver. It is not at all an easy role to fulfill. Even raising children was easier. First of all, most of us were younger and still full of energy. We were mostly not stuck at home because it wasn't nearly as difficult to take them along with us. Plus, it was, for the most part, a role we had chosen. I stress here, as well, that all this is also true for those with FTD... it is definitely the most difficult task I have ever faced. Caring for my husband makes it worse, but it was extremely difficult on its own.

Caregiving, at least for me and for many caregivers I have spoken with, is easier when we remember the love we have always had for each other. I constantly remember to give my husband a kiss (It's usually on the top of his head or on his neck because I still cannot get him to regularly brush his teeth.) or just a loving touch a little rubbing on his arm or back. Romance is definitely out of the picture, at least for my situation, but love is always there. He will come to me and ask for a kiss or to hold him for a while. It's not always at a convenient time, but I make time. Of course, sometimes, he asks me if I am his wife first. I can live with that.