I guess I'll go first with this one.
The thing that stands out the most for me about MIL with alzheimers.......
Everything is ALL ABOUT HER. I could cut my arm off and be bleeding on the floor right beside her and she would worry about who was going to bring her a cookie.
I am treated as" a nothing" in her world.
Then I feel guilty for thinking she's an old battleaxe.
Well that's my confession.
How about yours?
No time off ever even though mom lives in her senior apartment.
Afraid to silence phone to rest.
Seniors taking care of older seniors is hard.
I want a day off. Just one. A full day off. One day.
When I visit him at the memory care facility, he keeps asking me what should he do. About what, I ask. No answer. He asks if he should take a bath, how he should dress for a doctor visit, how he should eat, etc. He never remembers my answers & it all starts again when I visit.
He has developed peripheral artery disease in his left foot, for which he had an angiogram with interventions last week. I don't think his foot will get better so I think we'll be looking at an amputation. This scares the daylights out of me since he will have no idea why, if it comes to that. And it will further increase his passivity & dependence.
I feel sorry for him & am anxious as there seems to be no good options at this point. Most people would say "don't go looking for trouble", but I feel like I have to look ahead & be prepared for the worst. This is what bothers me the most about caregiving - the unknown & being caught off guard when calamities happen, which makes for a very anxious life.
I think this is what most bothers me about caregiving.
I hope you are holding up as well as can be expected. Hope that if/when you read this, you had a good day. That you're not feeling too overwhelmed and able to keep going on as a caregiver. I also hope that you will know when to step back from caregiving and let the pros step in to do their work. As we often read here, it is nearly 99% impossible for one person to do it all. One word I hate is "Multi-tasking"-that should be a swear word, 'cause the clueless folks out there not doing caregiving think that....you can: take a loved one to the doctor's office, make sure the right meds are at the pharmacy and pick them up, maybe another doctor's appointment, make a meal, clean that one part of the house where the dust bunnies are openly mocking you with their antics, grocery shop, take care of household pets, chat with your loved one-just to make sure they're not declining too much-or yell at your loved one-'cause somehow they now blame you for everything wrong in the world and it's all your fault, and then your phone rings and another doctor's office would like a word with you about stuff, you think you're loosing your mind-nope-it's "only stress"....annddd on and on....
Watch me cook, pick, prod at plate, pour 3 tablespoons of salt on (it's fake salt) without tasting, where my "linen "napkin, meal is now toooo salty, do you have any salmon, where's the cheesecake, I'm not hungry. ..
AHHHHHH
The lack of me. Not knowing who I am anymore, what I used to like/love before I got into THIS. Not being able to consider, acknowledge and appreciate my very own wishes, talents and skills anymore. Being a human mould to somebody else's needs and fears, not knowing when it will end.
That my own 16 year old son suffers from me not being there for him when he needs me. I feel I am giving all my energy to the wrong direction: to the past (my parents) who will die soon instead of the future (my son) who will blossom. This elderly care lasting for years & years feels wrong, perverted and unnatural. It bothers me that with 50+ years I inhabit more the role of a daughter than I inhabit the role of a mother.
Sometimes I feel like Charon setting dying folks over the river Styx just that it is not a river but some never ending ocean. I am so exhausted.
I rather think you are setting a really good example for your son, of being a care giver. Can the two of you have a weekly five or ten minute chat? No distractions, just a quiet couple of minutes to talk.
Since you've refernced Charon, perhaps re-read a good translation of Homer's Odyssey-dude was trying for 20 years to get home. Greeks knew a thing or two about persistance.
I hear you, and 90% of these family helpers are unpaid women. This is a scandal.
Sometimes I think about the immense energy and effort I have put into their care since I was 29, and now I'm beginning to wonder what they did to have their kids turn out this poorly. I also have a little bitterness (seriously just a tad) towards the expectations older men have of being cared for. So few of them have ever been tasked to take care of someone intimately, and quite a large percentage leave their terminally sick wives. Why do they deserve this much when they return so little to this type of work?
My grandfather is my favorite relative and I will be here for it all---I'm POA and Executrix (which puts me in a mild paranoia at all times that his children will come after me or my kneecaps lol). Right now I am debating how much money we blow through for home care. When the savings run out, I feel like borrowing against the house for 30 percent of its value is a good move---it leaves plenty for Medicaid to want to grab up if it comes to a serious drain of all assets.
My life before this was free-spirited, and I made it that way because my childhood was awful. I cherish the smallest things right now when I'm able to be in my home. I feel guilty for spending so much on home health aides (he just came out of rehab for a bad spine infection), but then again, maybe he should have planned better. It is not my fault his children are awful---I deserve at least half of my week. I will be contributing from savings when I really need a vacation and he goes into a quick respite. Also the confusion on just how to proceed (is going on and off hospice a good option for lower-cost respite relief? If I take the equity, that adds another 50K to his current 2400 SS and pension, plus the savings. We're technically blue-collar and poor by contemporary standards, but his cost of living otherwise is REALLY low for a big city.
I just hate being the only one.
I pray that he recovers and he comes back.
My grandmother lived in a perpetual decline for over a decade, unfortunately her familial memories were gone within months. She became a body with nobody home.
I am not trying to be a downer, I think we should know what could happen and believe otherwise. I'll believe with you that he will recover.
May The Lord move on the scene and touch your dads body and mind.
I hate that this happened to him. I hate that this is our life now. I hate that everything we had is gone.
What's worse is I used to have a speech impediment and had to go to speech therapy for YEARS growing up. In adulthood, I speak clearly and with well trained diction. But, every time she mishears, she blames me and it is a constant flash back to my childhood of people not being able to understand me.
"Next time sister visits she's going to fly."
"Oh, you wish I would die?? Is that what you said??"
"No, no, Mom ... um ... sister is visiting soon, so that will be nice!"
"Lice? Did you just tell me I have lice??"
Good grief.
Most friends can't care
It happened almost overnight
I can't keep a normal job
I never got along with dad
He's just as arrogant and dismissive as before
I am depressed and overwhelmed
If I leave this falls on my mother I can't ever do that
I can't do this.
Is this now my life.
Pretty sure my aunt is a narcissist and has probably spent most of my life poisoning family against me but you'd think they would be smart enough to figure that out by now.
Like many people on this board I am a caretaker to an older relative with dementia (in my case it is my aunt who has no spouse/kids.) I don't live with her, I'm her POA and she makes this almost a full time job - she has a constant need for attention, a magnetic ability to draw all kinds of drama to herself, she absorbs my time and anyone else she can draw in. I have made considerable sacrifices (financially, personal time and aspirations) to take care of someone who is by nature manipulative, demanding, and pretty mean but sprinkled occasionally with some nice moments.
Upside is I'll never receive validation and that was a clarifying moment for me.
In families the person who served as the family scapegoat that everyone spoke ill of and blamed everything that ever went wrong in the world on, is almost always the one who ends up being a family caregiver.
No, you will never receive validation from your aunt or any other family member. You will always be devalued by them and your help will always be white-washed over and taken for granted. You're not alone. This is exactly how it is for so many of us.
I hope at least you are getting decent financial compensation for doing so much for your aunt. If you're not, then drop her like a bad habit.
Tell her straight to either remove you as her POA or you will go down to the probate court and have them legally release you from responsibility. Then walk away. If your family has a problem with this decision, they can step up and take care of the aunt.
Find a different caregiver. If you hire privately and pay decent wages, you'll get a quality caregiver with excellent references.
If your help is through an agency, chances are you'll always have to keep a close eye on them. Agency help gets very low pay (usually minimum or a few cents above) and they will hire pretty much anyone. Don't be fooled by marketing and care agencies claiming their homecare aides are all highly-trained, supervised, and have all kinds of client support from the agency if they need it. They get nothing. Always keep this in mind when hiring agency-employed homecare aides.