Hi all:

I'm so glad this forum is here, especially because I have failed to find resources to advise me. I hope this isn't too repetitive. I have scanned and gotten insights into individual issues. But, I'm not sure how to deal with the package.

Three months ago, my 88 year old mother went into the hospital with a disabling UTI. That was fixed. Then skilled nursing. Then home with health aides. Then back to the hospital with another UTI, this time ending at a board and care facility.

During all that and since she has refused PT and OT and pretty much only remained in bed. She claims to have head problems when upright. Sometimes these pass after a long time upright (like an hour or more). Sometimes they persist and grow more intense. At this point, she has a large bed sore and routinely yells in pain. Once the pain passes, she claims not to hurt so there's no need to move (an ironic benefit of dementia?).

She has been intensely depressed and that has only gotten worse as she becomes weaker, deeper in pain, and more dependent. The few excursions that weren't in ambulances -- to the doctor, to a movie -- only seem to lock in the depression and decrease her desire to help improve her condition by getting out of bed.

I'm at a loss. This reminds me of my dog late in her cancer when she just wanted to go off alone to die. The difference is that my mom isn't close to death. She doesn't deserve years of what she is going through now. But, I don't know how to help her change gears.

She's on depression meds. We have taken her off of her blood pressure pills (hoping to stem the dizziness). We make plans to do things she enjoys. But, she just cancels. Her doctor -- a wonderful, talented, and sensitive man -- still addresses her like a mechanic. He can't fix what she won't help him fix.

If anyone has advice, I would love to hear it.



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Hi Gary,
You really do care about and love your Mum very much.... your Mums care needs are very complex and she might be better off in a Nursing Home...
but if you want to keep her at with you my suggestions to “ help with the whole package” are:
UTI: plenty of water and cranberry juice, get a urinalysis kit from the chemist and check her urine, her private area and underpants need to be washed and kept clean everyday, she might even have thrush from the ABs that were given to her for her UTI....
Feeling Dizzy: She may have a middle ear infection, or tinnitus, high or low B. /P, or just feeling dizzy because of infection: what is her temperature, pulse, and B/P..., her blood sugar level might be low, is she eating properly???
Bed Sores: You need to move her off the pressure area..
Hire a pressure area mattress and reposition her and apply sorbolene cream to all pressure points every two hours
Hire a water chair and let her sit in it throughout the day
Is the bed sore open or infected, it may need a sterile dressing of allevyn after she has had her daily wash or a shower...
or A/Bs....
Give her a protein drink everyday it helps with healing bedsores and improves skin integrity
Helpful Answer (0)

I am so sorry that you and your mom are struggling with these issues. This is so difficult. It is hard watching a person lose their will due to suffering.

I cared for my mom. I can empathize. My mom was a challenge for me in similar ways. Her BP dropped too low on meds. She actually improved after being taken off of the meds. She ended up in the ER from weakness with too low BP.

My mom went through being discouraged. Who wouldn’t be in their circumstances? The question becomes how do they cope with their situation and then how we can help. I found enlisting the help from medical professionals was the best way. Some parents cooperate and others don’t. Good luck.

Sores? That generation is extremely modest. My mom didn’t even tell me about the sore for quite some time.

Even though I bathed mom the sore was in a spot that I could not see because she sat in a chair while bathing and she bathed her private areas. This sore was very low on her but.

Once I knew about it, I insisted that she have it treated. Make sure the person is knowledgeable in wound care.

Caregiving is physically and emotionally exhausting. Best wishes to you and your mom.
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For sure, she needs to be seen by a geriatric psychiatrist. They seem to be the last specialty who look at the "whole person", body, mind and soul.

Also consider a hospice evaluation. Your mom may indeed qualify and the extra attention will be good for her.

The day I stopped trying to "fix" what was wrong with my mom with dementia was the day I got some of my sanity back. At this point, it's about comfort, not cure.
Helpful Answer (4)
noobforlife Mar 2020
Thanks Barb. When she was last at the hospital, a psychiatrist stopped in to talk to her. It was a great conversation. I'm going to try to get her to see him this Tuesday (it has taken weeks to make that happen). And I say "try" only because she can decide not to do it at the last minute.

Interesting about hospice. I'll try to find someone to talk to about this.
Don't think she should have been taken off BP meds. You should consult with a Dr. before doing this.
Helpful Answer (2)
noobforlife Mar 2020
Thanks JoAnn. It was the doctor who suggested taking her off the BP meds to see if it helped address the dizziness challenge.
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Well, dementia is a terminal disease and you really don't know how 'close to death' your mom truly is. Chronic UTIs are common towards the end of a person's life, as they were for my father. You also can't save her from herself............if she doesn't want to get out of bed or do PT and OT, you can't force her.

With dementia, people often have a hard time expressing themselves accurately, especially when trying to describe pain or discomfort, dizziness, etc. I went thru YEARS of my mother suffering what she called 'vertigo', dizziness, vomiting sometimes, balance issues, etc. Sometimes it was truly vertigo, other times it wasn't. It was, however, ALWAYS dementia and an inability to express her discomfort coherently. Back & forth we went, like hamsters on a wheel, to the ENT for Epley maneuver treatments. Sometimes they worked, sometimes they didn't. Now that she's 100% wheelchair bound, the vertigo has disappeared, thank God.

Depression is an odd thing; sometimes it can be managed with medication; other times it cannot. With dementia, there's no magic pill that's going to 'fix' them. Depression can remain intact no matter what, especially if they've given up or lost the will to live.

At the age of 88 and suffering with dementia, I'd respect your mother's wishes at this point, whatever they are. There comes a time when NO medication works because the issues are too vast to address, really. Dementia also progresses to the stage where their quality of life is GONE, and nothing is going to bring them back to their former selves. I believe we, as their children, have to accept and understand that, and realize we can't fix them.

If you'd like to take your mom to a gerontologist or psychiatrist, as NoTryDoYoda has suggested, that may be a good idea. I would not get my hopes up, however, because again, it may be too little too late.

Know that a life of 88 years is a very, very long one. My mother is 93 and expresses the desire to die on a daily basis. I respect that, but remind her that it's not within my power to make that decision; it's up to God. Every single thing we've tried (medication wise, PT/OT wise, etc) has not worked with her. She's reached a point where her body and mind have stopped working properly and ain't nuthin gonna fix that now.

Wishing you the best of luck.
Helpful Answer (2)
noobforlife Mar 2020
I very much appreciate your thoughtful and thorough response. It's a weird feeling. She clearly wants to die. She expresses so every day, albeit in an ironic framework. But, everything in the system is about keeping her alive.

Given that, her choices lead to more pain (e.g. bed sores, increased weakness, mental feebleness). And this is the problem. The only way I see for her life to end at all comfortably is by embracing life now, getting up, working with PT, etc. Otherwise I only seem misery growing.

My father-in-law went through something like this. But, he was in a situation where eventually he could direct his family to stop interventions. This is not the case with my mom.

I can't support her wishes. It's cruel to debate with her. It's a lousy way to end a rich and accomplished life.
So, she has dementia. Sorry, but a person with dementia cannot be reasoned with.

Sounds like her depression meds are not helping. Instead of a primary care doctor, I would suggest a specialist like a gerontologist or a gerontologist psychiatrist.
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