Confused, delusional, and dependent on you, they are always there. They are the last thing you want to think about as you close your eyes to sleep and the last thing you want to think about when you open them in the morning. Even during the night, you hear them talking to imaginary people and rambling around the semi-contained part of the house where they can't hurt themselves.
It should be noted that we should not expect a person's natural personality to change just because of dementia or Alzheimer's. A person known to be "difficult" will likely remain so. This means traits such as exaggerating, manipulating, and generally just being nasty and hard to deal with will continually resurface and not stay buried. This and dealing with their hallucinations, a common symptom of these diseases makes the challenge of caring for such a person even less pleasurable.
|And Yes, They Do Hallucinate |
While not putting upon you physical pain, like many of the other curses we face, these diseases rob the caregiver of their freedom and nibbles at their soul. It is always there and limits everything you do. The mindless babbling, the potential for an emotional meltdown, and the constant and never-ending intrusions creep into every part of your day. Those talking to them during a phone call or brief encounter may think the dementia sufferer they are talking to is lucid but that is because they do not realize the person they are talking to does not even know who they are.
After telling them a dozen times who you are over several hours you can ask them, "do you know who I am?" and generally the answer is no. This is one of the reasons we in the trenches that find ourselves caring for such a person sometimes, consider them as simply "bat shit crazy." Another thing, those suffering from memory loss are not always easy go lucky and happy, in fact, they often have little reason to be. Mixed in with their confusion is often anger at losing themself and their independence as well as fear and paranoia over what the future will bring as they get worse.
|Protecting Them From Themself |
What do we know about the abuse and threats both physical and mentally put upon these people by the so-called poorly paid healthcare workers at the bottom of the system? Most of the promises of society to lend a hand are a lie and generally come to naught. These promises amount to no more than an expensive bureaucratic circle jerk. Enough said, bitching about the situation may clarify it but changes little. Most sane people that take on the task of caring for someone with dementia do so not so much by choice but feel they have to.
The above reflects my experience during this rather difficult year. This was not written for the blog but in reaction to distant relatives that try to paint the situation of taking care of mom as no real problem. Some even allude to the notion it must be nice to be able to do things with her. For others of you facing a similar situation or should I say burden, I decided to put it out there for readers to see. For the record, these diseases are becoming very common. For more on this subject please visit the link below to see an article that appeared here last April. https://brucewilds.blogspot.com/2022/04/living-with-older-parent-suffering-from.html
(Republishing of this article welcomed with reference to Bruce Wilds/AdvancingTime Blog)
Thank you, again, for your honest and thoughtful insights. Very difficult issue with no easy solutions. Dementia, and what it can do to families, is potentially the worst thing to happen to anyone. Scares the hell out of me.ReplyDelete
YOU ARE AN ANGEL!ReplyDelete
This is from one who knows. I/we spent 6 years caring for my MIL with dementia and rage issues in our home. We call it our "6-year Twilight Zone episode". The hardest thing we have ever done, by far. Your mothers meltdown at Sams brings back memories...MILs mantra while still verbal was "they stole my house, they stole my car, they stole all my friends". Sad, but true in her world. Although early on she still had times she could pull off a semblence of "functional", by afternoon sundowning it was blatantly obvious that she could not live alone nor drive. Luckily, I discovered there is a cheap, easy way to fix sundowning - sunshine! An hour or two outside every day made that weirdness completely disappear. 3-4 yrs into our caregiving, science caught up and they started putting solariums in nursing homes.
Then halfway through this journey, also took on the care of my 95-yr old grandfather. Oh, my. Dementia was bad enough, but then the rotting branches of the family tree started sending Adult Protective Services because we "took grandpas tv away" (moved the big console to his room and got a flatscreen so I could more easily move MILs wheelchair in small living room). Omg, distraught to admit I share dna with those idiots...as MIL was on hospice at the time, so we had an RN in once a week, a caregiver 3 times a week, a social worker once a week and a chaplain at least 1-2 days a month. All required by law to report anything "off". Thank heavens the hospice folks had all made me promise to take care of them when they were old...so they set the Adult Protective Services folks straight! To the point the APS lady called to apologize, and when the family tried that ploy again, the APS lady called me to warn me what they were up to.
Hang in there - being a caregiver to a dementia patient is survivable. Was able to keep MIL til her release, she died so peacefully in my arms that I didnt even know for a few minutes. Its truly horrible when death is the best option.
10 years out, so glad I was able to do this. Especially seeing what nursing home "care" is like during the 5-day respites I got every 60 days the 2 years she was on hospice. I went every day to see her and feed her, because the seriously overworked/underpaid aides each had 6 helpless folks to feed at each meal. If nothing else, at least I have the satisfaction of knowing I could provide a far better quality of life for her and a measure of dignity.
And it taught me I am a far stronger person than I had ever dreamed to be.
The only thing I would add to your Alzheimers Communication chart would concern letting the patient retain at least a measure of respect and dignity...its literally all they have left. Dont talk to others, even medical folks, disparagingly about what you are dealing with in front of the patient...because of course, they don't remember anything they have done, so it just becomes an argument. When I would take MIL to doctor, the nurse would take her in to take vitals and I would go into doctors office to talk over concerns with her...then we would go in the room with MIL. Same deal with the hospice folks...would fill them in on the porch before they entered. Its not much, but its something.
I pray for strength for you and your family...
No, I'm not an angel, this is a situation I inherited, I did not choose it. From your story, you are the angel. While what I'm going through is bad, what you went through sounds far worse.Delete
I know what you are going through. I went through with my father for almost 3 years before he passed away in 2018. It was the hardest thing I ever done. It was like a living nightmare a lot of the time.ReplyDelete
Bruce: I beg to differ...you are doing the work (and miserably hard work it is) so you get the credit. A LOT of credit, as you didn't choose it - but are still doing what needs to be done.ReplyDelete
"While what I'm going through is bad, what you went through sounds far worse." Use that! I got through a lot of weird days by thinking of how it could be much worse. At least dealing with elders, you know its a "limited time engagement"...they are old, so you can (somewhat) console yourself that this isn't going to continue long term. The poor folks with children with disabilities who could never live on their own, or have damaged service members, have it worse. Far worse, because they have the added stress of knowing once they are gone - strangers who don't care and are poorly paid will be "caring" for their loved ones. It doesnt help much, but some...and as caregivers, some is better than none!
There isn't much help available to caregivers, but some. Check out your local Council on Aging. Every county has one, even here in the hinterlands. Ours has an Adult Day Care program from 9 am to 1 pm, and they feed the clients lunch, also. OMG, that service saved my sanity over and over. The director and workers were wonderful and taught me a lot about dementia, rage, coping mechanisms, etc. The Council on Aging also runs the Meals on Wheels program. If your senior can't get out on their own, they qualify...and you pay what you can, if you can. Early on, it was hard for me to cook, because i had to take everything sharp, pointed or otherwise dangerous out of the home and put it in the barn loft, because I kept finding my butcher knives in her pillowcase, paring knives in her shoes - while she was wearing them (!), scissors in her bra, etc. And with her rage issues...oh, my. Only reason we survived is because I was a foot taller than her, and hubby a foot and half, and both strong...so we could pick her up and hold her at arms length until the rage passed so she couldn't hit, kick or bite us (again).
Other helpful tips:
Invent an extra birthday and get your mom a pretty ID bracelet with her name engraved on the front, and dementia with your name and contact info on the back, in case she wanders away or escapes. Take off the clasp so it can't be removed. Also go to talk to your local sheriff and fill them in...so if she does get away, they don't have to wait out the standard missing adult time frame.
In the same vein, have her doctor give you a letter stating her condition and that for her own safety, she must remain with you. MIL, when at the Adult Day Care and having a "sane moment", kept trying to borrow money for a bus ticket or beg a ride so she could go home.
Get all your paperwork in order. Durable legal power of attorney, durable medical power of attorney, home and vehicle titles, removal or not renewing drivers license, etc. Even if you have to try numerous times for a "sane" moment for her to sign stuff, or bend the truth to get her to sign.
The Council on Aging can also offer help with housework, running errands/shopping, etc. Call them, they will send someone out to assess your need and offer whatever they can.
Stay strong, you can survive this insane journey. It does take quite a while to recover, but you will. After MIL died, had planned to go back to my awesome work as a high-end graphic designer. But hubby advised that i give myself a year or two to recover because it was so wearing. And after 6 years, we were used to being poor...so I did. Got back to my beloved gardening, and now I have a little flower farm...and couldn't be happier! All the happier, because no matter what life throws at me now, at least its not that again! (hehe)