I'm so tired of reading articles about how we're supposed to treat our LO with dementia. I bet I could find over a thousand articles on this site alone. And what are our guidelines as caregiver? Walk on egg shells all the time while their disease steals our lives. Is it some martyr complex people get off on? I don't get it. This is the most miserable life and I could never have imagined how hard this would be. If I could have imagined it, she'd have been in a memory care facility years ago.
Her dementia is killing me. And I know for sure that if I ever get diagnosed with this beast of a disease, I won't put anyone through taking care of me. No way.
I'm venting and angry tonight. It feels like there is no end in sight.
Just know there are others who feel your pain and can relate well. We don’t even know what our lives would be like without all this caretaking. Please seek the help of professionals to help you out with care before you fall apart.
I think in another 100 years we may get more progressive about this issue, and allow people to choose not just no more life-prolonging treatments if they are deemed to have progressive memory loss, but death with dignity options.
I probably sound a bit heartless but I'm far from it, it's just that this current way of dealing with old age seems unsustainable to me.
People need to plan for these things, too, so their end of life isn't life ending for others. My father, for example, still refuses to put POA in place, which is ridiculous on his part.
No matter how frustrating it can be this is a chore I took on somewhat willingly. But still, it is a constant in my life. Even now, every time I make plans it’s in the back of my mind what to do if I get another call.
I'm sure you will find many people that have gone through what you're going through. I did. At 70 my husband and I lived in the country and we bought a house in town so we could take care of my mother. We moved in one weekend moved her in the next week She was 88. she had lived with my brother for a while but started getting dementia. It was mild. But she had already spent 4 years with him. She had 11 children I be in the oldest. So I moved her in with us thinking how it was going to be good to be taking care of her, but within 2 years she got pretty bad. All her vital signs were good she didn't have heart problems, No diabetes, and she could get around by herself with the aid of a walker as time went on. But her memory was failing her the first year wasn't bad the second year she didn't know where the bathroom was no matter how many times I took her. During the second year my life and my husband's life changed what I would say I was used to coming and going anytime I wanted to but my mother was afraid to stay alone,so I could get a brother or a sister to come and stay with her for a couple of hours if I had to run to town at night she was afraid to sleep by herself so at 7:00 my husband would go watch television in the living room till bedtime and I would go to her room and watch television till she fell asleep that went on for 2 years. In the day I would sit with her in the living room and watch television or I would do my housework with my eye on her. When she got paranoid she wouldn't let me see her jewelry only one of my sisters could do that, she forgot my name when one of my sisters would come by and I went to the store she would ask who is that? And it hurt my feelings that she didn't know my name and here I was with her 24/7. I was very, very resentful. Here I had put my life on hold and she couldn't even remember me! I have three sisters one lived in the same town but didn't really visit much, the other one she came as much as she could. She lived about a hundred miles away. I have seven brothers and none had the capability of taking them to their house. I felt as housebound as she was. This past year she had a fall in the bathroom and broke her hip which landed her in the hospital. Mom had to have surgery and was in a hospital all by herself because of Covid. In the town for we lived it was hard to find a nursing home that hadn't had Covid. I prayed a lot during that time. I finally decided that she would come back home. in my mind she was going to have physical therapy and she would walk again. Before this fall happened she had been with hospice only because it was more convenient for her to have a dr. come to the house. The nurses would come and check her vital signs twice a week she had started sleeping a lot. She continued with hospice after she came home. And she rebound for a while, but they knew that she wasn't going to make it. In my mind I thought, no I'll get her well and she will walk again. But that surgery was hard on her, being alone in the hospital,not speaking English was hard on her. To the point that when she would wake up in my house in her bed she would try to speak English because she thought she was still in the hospital. Gradually she stopped eating she stopped drinking and she developed bed sores which really we stayed on top of. She finally passed away. And if I could do anything to change that, I would have. No matter how old we are or how ready we think we are, we're never ready when our parents die. I haven't grieved as much as the rest of my family members have. I have the hope of seeing her again. But I wish I had done some things differently. I wish she hadn't seen my resentment. (I did some yelling). In the Bible and Luke chapter 18 verse 20 the last part of the verse says honor your father and your mother to me that says it all. But I kind of do know what you're going through.
We all know that you dealt with your moms bowels cetude, you should seek some counseling to get over having to tell everyone every time you say anything.
"Well, apparently you've learned lesson #1 in dementia caregiving... there are no guidelines, no caregiver manual, it's all OJT. When it gets beyond you're capability you look for a care facility. It's not doing you or your mom any good so place her where she's cared for and regain your sanity."
I knew nothing about dementia before mom started showing some odd signs. I did some research and figured this is likely her issue. The problems I see are:
1) every person exhibits their own symptoms, based on the underlying cause and their own "path"
2) while there are many suggestions for dealing with said symptoms, not all work in all cases, some not at all!
Being on this site has taught me more, and I continue to learn more when researching responses to others. Neverending story...
One thing I knew is that I would not be able to take care of her physically. I started with trying to get bros on board (to this day I don't think either fully grasps ANY of it!) Attempts to start bringing in aides, to get her used to them so we could increase the times/day needed so she could remain longer in her own condo failed less than 2 months later (only 1 hr/day.) Then it was looking for a place and coming up with plan B for the move (she refused to consider moving anywhere, esp not AL and EC atty told me we couldn't force her, we'd have to do guardianship, but facility chosen wouldn't accept committals!)
Since that introduction, I have learned more and in hindsight there were some very subtle easy to miss earlier signs. Not living with someone else, only seeing her random times, it is VERY easy to miss even the less subtle signs!
Anyway, once we found a nice place and could get plan B in motion (fib based on her own medical issue), she was moved to MC. I am the one managing everything for her (finances, medicine and non-provided supplies), ensuring she's cared for well there, getting medical/dental needs addressed and until lock down visiting. Her decline has been in stages, but given the progression, no way would caring for her myself have worked! Bros, on getting sticker shock of the cost, were hyped up on doing it themselves, assuming they would get that much as well, but either case would have been a disaster!
"...she'd have been in a memory care facility years ago." Can you do it now? MC or NH? If no funds, Medicaid? Even if there's no placement open, Medicaid can sometimes provide funds for in-home care - any help you can get to take some of the burden off can help! I believe Medicare also allows for respite care. Check it out.
"...I won't put anyone through taking care of me." You want to be sure you have legal documentation all set up for yourself, to cover this if you end up like her. The biggest issue with dementia is you might not know/understand you need the care! My mother's plans included moving to AL when she felt it was time, but dementia threw a monkey wrench into that! She insisted she was fine, independent and could cook (not true!) AND mentioning AL was tantamount to suggesting she take poison!
Even just managing everything for her is taxing, esp dealing with her condo, contents, cleaning, repair, selling and taxes after the fact!
Do look into getting mom into a place or getting help at home before you lose your mind!!!
This is a personal decision for everyone. I know what my parents wanted before dementia kicked in and took over, so I am doing my best to honor that. There will be no serious medical interventions - simple ones, yes, as they can make what is left of their life more comfortable, but no heroic treatments. She has a DNR in place.
That said, there are those who live into their 90s or even beyond 100 who are hale and hearty, given their age, and have their faculties intact. There are those who develop dementia sadly at a relatively early age. The big issue is this tsunami of dementia and WHY. While many passed away at a younger age years ago, it isn't just medical interventions that have extended life, resulting in this unusual aberration. Better safety, health care, diets AND living conditions contributed to healthier people who live longer. Yes, some had interventions that have extended their life, but it isn't necessarily those who develop dementia. Certainly there was dementia long ago, but not as pronounced as now. Yet there were also those who lived long healthy lives even long ago, both with minimal interventions as they didn't exist then.
My mother was into her early 90s before dementia started. Other than hearing loss and BP meds (long time), a few interventions for things like rotator cuff in her 80s, she has NOT had major interventions. She was about 93 when we moved her to MC. She is now 97, has had NO medical interventions since then other than antibiotics and a knee injection, to make her life comfortable. Her dementia has progressed, her memories/life are now about 40+ years ago, she started with mostly self-care and mobile and progressed to rollator, and eventually a wheelchair (mostly due to inactivity and fear of falling.) Most ADLs are now assisted. She sits and reads and feeds herself. She interacts with staff. Other than the dementia and BP, she hasn't had medical issues that needed interventions to extend her life. Yet there have been other residents in her MC who were much younger, some younger than me! Most have no real medical issues, just the dementia. Would their families agree to major surgery, etc? Who knows. I know I wouldn't unless it wasn't too invasive and/or she were MUCH younger. The ortho who did the injection said if she were 20 yrs younger we'd be talking knee replacement. Nope, not about to go there! She actually knew she needed it done years before dementia, but never committed to it.
Mom recently had a stroke and they were asking me to approve taking her to ER for testing. She was refusing. It was clear it was a stroke, so what exactly would they do for her, besides testing (making $ to confirm what we knew?) I told them if they can get her to agree to go, try it. Otherwise, nope. Go figure, we then requested hospice and were DENIED! On top of all her existing issues, she now had right side weakness and she's right handed, so trying to eat lefty was a joke and she's now a TWO person assist as she couldn't stand/walk before and now can't pivot. We didn't want any real intervention, just comfort care and can't even get that!
So in many cases it isn't about medical intervention extending life. Sure, it applies to some, and some people WILL agree to major interventions even if the LO has dementia, but we can't label this tsunami of dementia on medicine extending life or just being of super age. It just is. I do wish they could identify WHY so many are developing dementia. It won't be simple, as there are so many types of dementia and underlying conditions that cause it, but one can hope!
"I think some of the issue is all of the life-prolonging drugs and efforts, even while people lose all independence to dementia or mobility issues. That's a weird system, to me."
To a point, yes, it sometimes seems that medical tries to do too much. I knew my parents didn't want extreme measures (part of the POA process was filling out many pages of what to be done if this that or the other condition arises - oddly we didn't get a copy of this with the POA and other documents, but I had seen them and knew what they wanted.)
That said, my mother was over 90 when the first signs of dementia peeked out. She was still mainly healthy and capable of self care. By the time we moved her to MC, she was 93. It was mostly for safety, as she was still mobile and mostly able to self-care. We tried bringing in help first, mainly to check on her and that she took her meds, but after less than 2 months, she refused to let them in.
There have only been a few instances of simple medical interventions (e.g. antibiotics for cellulitis and UTI, knee injection for pain), otherwise no major medical interventions done or planned. We can't just put her down, like for a dog or cat... But if she were to have cardiac arrest, let her go, that's what she wanted. She has a DNR on file.
Over the last 3.5+ years in MC, her memories have regressed to about 40+ years ago, and she eventually migrated to a rollator, briefs, and now, due to fear of falling and lack of any real exercise/activity (SELF imposed!), she's in a wheelchair and requires help with ADLs. I did continue her Mac Deg treatments, mainly because her hearing is so bad that I wanted to maintain her eyesight (and she reads a lot, over and over, but still "active".) Nothing invasive done or to be done, yet she keeps on going! Like my 21.5+ yo cat!! Not much works anymore for either, including cognitively, but I swear they are both going to outlive me!!!
My point is that many times it isn't medical interventions that keep them going after the mental decline starts with dementia. My mother is now 97, and shortly after her birthday she had a stroke. EMS called and wanted my blessing to transport to ER for testing, which she was refusing. My decision was if YOU can convince her to go for testing, have at it, but if she says no, then no and definitely NO hospitalization. She wouldn't do well there. It isn't really clear what that would do for her and she likely wouldn't cooperate well with testing. So, she didn't go (she asked the nurse after EMS left who called them. Nurse said she did, and my mother got mad at her and tried to kick her!!)
"...but keeping everyone alive as long as possible even while they have little or no quality of life, and no ability to do ADLs, seems an absurd thing."
So, again, I'm agreed that going to extremes probably isn't advised if dementia is in play, esp if it is more advanced, but to each their own. Some still have hope and/or can't let nature take it's course. In our case, no major interventions. Even without them, who knows how long mom might stick around? She has right side weakness now post-stroke, some swallowing and slurring, but still is somewhat there and attempts to feed herself, so they brought in PT to help strengthen her arm and maybe leg (she requires TWO person assist now as she can't pivot.)
Hospice was DENIED, so what alternative do we have??? I won't agree to any invasive treatment, but so far the dementia isn't taking her out! I can only hope that something takes her out before this progresses too much further. I cringe when others marvel at her age. Healthy 97, sure. Dementia 97, nope.
I also can only hope that my future doesn't lead me down that path (I've already told my kids to find a nice place and watch over my care, but don't go overboard and certainly don't take on my care yourself if this happens to me!)
What a great posting!!! You speak for millions.
Sending you a bazillion hugs!
As you can see, everyone empathizes with you.
I sincerely hope things will somehow get better for you.
One of the sleeping pills that the RN prescribed put her out completely and she never really recovered. I sent her to the hospital where she passed away a couple weeks later.
I MISS HER SOOO MUCH!!
Your statement is exactly what my husband and I told our kids/grandkids in 2018 after going thru having both of our moms suffering from dementia and alzheimers. It drained us physically and emotionally. And after the passing we knew we didn't want to do this to our children. My sons mother in law also was going thru this at the same time and they lived with her and cared for her.
But, my husband was diagnosed with dementia and onset alzheimers a couple of years ago after we lost our LOs. It has progressed steadily but slowly. He has now decided he had better not get "stuck in a damned nursing home by me or the kids". I help him dress, in and out of tub, make sure he takes his meds, etc. I do all of it except make his coffee and put his jeans in washer then dryer unless he is feeling bad. I know he will be either dead or in a wheel chair this time next year and I've told him I cannot keep this up because I am exhausted and have destroyed my rotator cuff, pulled tendons in my arm, screwed up my back from picking up my mom and now him and I need a knee replaced.
Hopefully neither you nor I will go before we can actually have a life. But, there is a chance you will do as my husband and my mom and decide you want no part of a NH or MC.
Try to find someone to take over for a week or so even if you don't leave your home. You HAVE GOT to get some time to yourself. God Bless.
You're all warriors. Thank you so much for your responses!
You're all warriors. Thank you so much for your responses!
i brought both of them to live with me (ages 93 and 94) because no one in the family was willing to help and they could not take care of themselves.
The joke is on me. I’m taking care of my mother, the woman who abused me as a child and was the reason why I left PR. it is so difficult smiling at them each morning when I serve them oatmeal or cream of wheat for I remember her being mad at me at the age of six and sending me on the bus to school after she poured oatmeal on my hair.
For years I’ve prayed and asked God to help me with the mental anguish I’ve gone through.
Now I get to care for them! How devastating is that?