My ninety-two year ole Mum, who is a former school teacher and who I am her only son and elder representative as her POA and Health care proxy in a state 700 miles away for the past six months since I got a job here. Ok, for the past four years, I got her together in the house she has lived in since 1958 with the Acorn stairlift, full-time live in home Attendant . She has balance issues and dementia which are getting worse. In the past week, suddenly she says she cannot walk. Yes, she has "spinal stenosis". She sometimes resists her home attendant's attempts to get her out of bed and they took her to the hospital, thinking she had a urinary tract infection. According to her primary doctor she was "dehydrated" and released her the next day. She seems to be giving up on living. Her neurologist says "this is typical and will pass"; Her Primary wants to give her anti-depressants. Maybe she should stop taking all high blood pressure meds? I am fielding any and all suggestions and similar experiences here please. She speaks to "wanting to die" sometimes, but we all know it is not as simple as that. Many Thanks.
Imagine, you have had a good life that has been wonderful in many ways, but there really isn't anymore wonderful to come. Perhaps it is physically painful to go on. Most or all of the people who knew you through all your phases of life are gone. Life is no longer the big loss that it is when you still have so much wonderful before you. This is especially so if you believe you will see lost loved ones in an after life.
My Aunt could have continued living in her current state for much longer. She had been ready to go for a couple of years and finally told the doctor to put her in hospice and ceased taking food or water. She passed about 9 days later.
Sometimes we love them so much that we do not want to let them go. But love is doing what is best for them and sometimes that means letting go if it is what is right for the loved one. Keep your mind open for this possibility. A visit home would probably be a good idea so you can truly assess what is happening and determine the best way you can be of support/service to your mother.
I understand how hard this is for you. Twenty years ago my mother called me to the hospital bed, told me she was ready to go but I was keeping her there and I needed to let her go. I told her it was not her time and to fight to live. I also promised that when the time came I would let her go. She continued to have a wonderful life with international travel etc. Three months ago I knew she was deteriorating and ready to go. I took her home from the rehab hospital, called in hospice and she passed in three weeks. You need to spend time with her to know how best to support her at this time.
This is not an easy time for you, but you have shown yourself to be up to the challenges before you. Make decisions out of love, putting her needs first and you will do what is best.
It would be a bit easier if her circle wasn't so small. She'll only eat certain foods. She'll only go to two restaurants. She won't call or visit with the few friends that are left. She's diabetic, so we're really locked in on the diet thing. I consider having pizza as breaking free. She doesn't like Italian or Chinese or much of anything -- argh! That includes salads and most vegetables.
My mom wasn't even 60 when she started planning her whole life (and consequently, her "ability" to spend time with me) around ridiculous trivia. It's too hot to leave the house. It's too cold to leave the house. She doesn't like to drive to (fill in the blank) -- basically, more than 5 miles from home in any direction. Wouldn't eat any pizza except so-and-so. Didn't like this one's music, didn't like that one's furniture. On and on. Good grief.
When I'm 60 (h*ll, and 70), I'll still be dragging my azz to work every day. Regardless of weather, distance, Muzak in the elevator and quality of cake that's served for special occasions.
For some of these oldsters, their worlds are as small as they make them. Then when the health compromises set in, it's a double-whammy. Or self-fulfilling prophecy...?.
#1 They've lost part of their hearing.
#2 They have low vision.
#3 They've lost their olfactory sense.
#4 They've lost bowel function.
#5 They're incontinent.
#6 All or most of their friends have deceased.
#7 Medications make them lethargic.
#8 They should NOT stop blood pressure medication without their doctor's protocol.
#9 They're no longer able to enjoy the activities they once were able to perform (reading books, reading a newspaper, watching television, doing crossword puzzles, etc.)
#10 They're in constant pain.
Sounds like not-so-much a "fun-filled" life, doesn't it? And there you have your answer. Many times an elderly parent will ask "permission to go," e.g. to die. My own mother foretold of her own passing, saying such things as "I've lived long enough. It's time to go. It won't be much longer." Of course, the daughter doesn't want to hear or dismisses these statements, but she was actually RIGHT.
One extremely good decision we had made towards the end of my late mother's life was that I left my Maryland home and moved in with my late mother, where she was "not keeping house" in her own home in Massachusetts. So the dreaded "middle-of-the-night" phone call never came, since both my brother, a California resident, and I were both present when she died.
Perhaps antidepressants are helpful--I've not found them to be so in elders. Maybe go visit her, see what she's really feeling and accept that at 92, being OK with dying is perfectly normal. We're all going to go, one day.
Maybe you are the one who needs to accept this. Make sure mom is well cared for, and prepare yourself for the inevitable.
Let the doctor put your mother on an antidepressant. I finally had to put my Ray on Zoloft and I am so glad I did. It doesn't make him 'dopey' but it has calmed him down from his constantly worrying about what I will do after he is gone. It beats looking at him sitting "hang-dog" all day long. Now he smiles again and asks me to take him to sit outside every day.
If your mother has reached the point that she needs a little help to smile, let her have it please.
Also, find out if your mother has broken sleep from needing to get up constantly through the night. This is what is happening with my DH and I have had to keep to his 'schedule' for about a week and I can attest to lack of sleep = staggering and dopey. We are now working on finding a solution to his need to void every 1-2 hours.
Good luck, it's not easy being the caregiver but it ain't easy being the one cared for either.
Even for myself, now 70 years old I am feeling my own age decline starting. Now it's a struggle to get out of a sedan, so I am sticking with my old SUV which is so much easier.
I am ready to invent some type of cat little box that one can raise up and not have to squat in front of it to scoop it out. Darn if I now I am having issues trying to stand up :P
When I was a decade younger, I never realized that the older generation was going through some of this.
Oh, and what is it with napping after lunch? I use to chuckle when my parents did it, now I am doing it. Seriously !! Glad I am on-call for work in the afternoons as the telephone will wake me up :P
Early in Coy's dementia we attended a seminar about Lewy Body Dementia, put on by the Mayo Clinic. For one part of it the persons with dementia went into a different room, and the caregivers had a separate presentation. The presenter asked us what we do to cheer ourselves up? What gives us pleasure? She wrote our answers on a flip chart. They included things like drive to the river and take a walking path, hiking, making cookies, putting on favorite music, taking a long bubble bath, etc.
Then the presenter went through the list, one by one, from the point of view of the person with dementia. Anything that involved driving was crossed off. Can no longer get in and out of bathtub. Hiking and long walks don't work. Can't remember how to operate the radio or other sources of music. Not allowed to use the stove alone and need assistance in the kitchen. We saw almost all of the things we do for pleasure removed from the list for persons with dementia. No wonder they are crabby! No wonder they want to stay in bed some days!
This was a very sobering experience. I remember that presentation 15 years later, though I've forgotten anything else from that day.
I remember my Dad [94] was doing ok living at home with a caregiver, but he really perked up once he moved into senior living and was around people closer to his own generation. He made sure he was always on time for his meals in the main dining room... he had trouble walking but could move pretty well with his rolling walker... just don't get in his way if he was heading to that dining room :)
Just an option.
Mother, of course, wants to stay in her home. It sounds like you have done everything possible to make that work for as long as it could. That fact of the matter is, most people with dementia cannot live in a private home with only one caregiver throughout the later stages. Dementia gets worse. What worked in the beginning may not work later on.
My mother had a broken hip that could not be fixed. She could not bear weight on that leg. The nursing home used a lifting machine and two aides to get her out of bed and position her in a comfortable wheelchair. Someone came and wheeled her to meals and activities. They used the machine and 2 persons each time she needed to use the bathroom. Mom also had dementia. I can't imagine her getting as much stimulation, attention, and care in a private home. She was quite content in her last 2 and a half years in the nursing home. She died at age 94.
A care center might be very good for your mother.
Meanwhile, if you mum needs high blood pressure meds don't discontinue them without talking to the doctor! Risk of a stroke is serious. Ask for other ways to prevent dehydration.
Mum is 92, has dementia, high blood pressure, and possibly depression. She is tired. Maybe some days she should be allowed to stay in bed. I think a nursing home would have staff that would be a good judge of that, and staff that could provide as much assistance as she needed with getting out of bed and getting around.
She says she wants to die. At 92 I think that is probably better than being afraid of dying, don't you? I heard this from my husband early in his dementia. I replied, "Yes, and you will die. Everyone dies eventually. We are not in control of when that will be. I want to help you have a pleasant life until it is your time to die."