Dementia Support Group
Dementia is the progressive decline in cognitive function due to damage or disease in the brain beyond what might be expected from normal aging. Particularly affected areas may be memory, attention, language and problem solving, although particularly in the later stages of the condition, affected persons may be disoriented in time, place and person (not knowing who they...
amelah
My mother is in a Personal Care facility -- fancy assisted-living type place. She has numerous health issues, compounded by mental health issues & dementia. She is on tons of medications for all of the above. Especially psych meds. She also suffers from a chronic anemic state & heart condition as well as a probable cancer in her pancreas (we can't put her through an invasive, dangerous biopsy procedure to find out).
All of this means that Mom suffers from confusion, imbalance, lightheadedness or dizziness. (She does not articulate her experiences unless we ask specific questions.)
She uses a walker now.
She has a bed that she has difficulty getting in and out of, so we lowered it by removing the wheels off the bedframe. Doubtful that we can find a lower boxspring.
The next step is probably getting her a medical bed. Problem is, Mom probably can't figure out how to get in and out of that either (with all the buttons to raise/lower it and the grab bars). She has difficulty with "body mechanics." Figuring out how to toilet properly. How to turn around to sit in a chair, especially as the walker gets in the way. Supposedly the physical therapist there is helping her occasionally, but that doesn't mean she remembers what to do.
I've had serious concerns about Mom falling. She's already had a few falls in which she's banged her head and skinned her knee. Each time, she has to go to the ER for a cat scan of her head. I worry about the number of CT scans she's getting lately. She is starting to hide the scrapes on her knees, not telling anyone she fell, as she doesn't want to go to the ER. I don't blame her.
We have a hired Medical Advocate and a strong-willed sister who acts as power-of-attorney. Truthfully, there's not much to be done. Mom's quality of life is nil. We're not doing any life-saving procedures.
But I wrote an email expressing my concerns about her falls and the probability of continuing to do so. How can we support her, I asked?
And don't you know -- tonight the staff found Mom in the hallway -- lying on the floor, tangled up with her walker -- unable to extricate herself from it :(
They wanted to bring her to the ER again. Medical advocate and POA sister overrode them on it. Plan to have her go to an outpatient CT scan tomorrow, to rule out anything "serious" rather than go to the ER. But even so, it's a risk not getting it addressed tonight.
But the thing is: Mom is going to the hospital every week, whether for appointments, tests, transfusions or because of a fall. I don't blame her for being tired of it. And we can't rescue her from her failing health.
As much as I'd like for them to do less CT scans (I hear they're dangerous when overused) -- the truth is, Mom has what? 1 year? less ? more? of living. The Drs have no idea.
I feel sad that she's on so many medications for so many ailments, but my hands are tied. I am not allowed to conduct my mother's affairs. This is up to the Medical Advocate and my sister. And without the psych meds, my mother would most likely be a real agitated mess.
So, what to do? She's still ambulatory. Dunno if at some point they're going to stick her in a wheelchair for safety reasons. Can't imagine they would -- because sitting is the death knell for a lot of elderly people.
We could perhaps "proof" her apartment better?? But tonight's fall was in the outer hallway in the building itself. Not her own apartment. So there's no safeguarding her there.
I feel sad for her. And I have to learn to accept that this is how it goes. Not much that can be done, I don't think. I'm open to hearing any of your experiences re. this -- suggestions, ideas, thoughts. But there's little that I can enforce or do. The only thing I can do is make suggestions to the Advocate and my sister.
Thanks for listening. Sorry this is so long.
((Hugs))
All of this means that Mom suffers from confusion, imbalance, lightheadedness or dizziness. (She does not articulate her experiences unless we ask specific questions.)
She uses a walker now.
She has a bed that she has difficulty getting in and out of, so we lowered it by removing the wheels off the bedframe. Doubtful that we can find a lower boxspring.
The next step is probably getting her a medical bed. Problem is, Mom probably can't figure out how to get in and out of that either (with all the buttons to raise/lower it and the grab bars). She has difficulty with "body mechanics." Figuring out how to toilet properly. How to turn around to sit in a chair, especially as the walker gets in the way. Supposedly the physical therapist there is helping her occasionally, but that doesn't mean she remembers what to do.
I've had serious concerns about Mom falling. She's already had a few falls in which she's banged her head and skinned her knee. Each time, she has to go to the ER for a cat scan of her head. I worry about the number of CT scans she's getting lately. She is starting to hide the scrapes on her knees, not telling anyone she fell, as she doesn't want to go to the ER. I don't blame her.
We have a hired Medical Advocate and a strong-willed sister who acts as power-of-attorney. Truthfully, there's not much to be done. Mom's quality of life is nil. We're not doing any life-saving procedures.
But I wrote an email expressing my concerns about her falls and the probability of continuing to do so. How can we support her, I asked?
And don't you know -- tonight the staff found Mom in the hallway -- lying on the floor, tangled up with her walker -- unable to extricate herself from it :(
They wanted to bring her to the ER again. Medical advocate and POA sister overrode them on it. Plan to have her go to an outpatient CT scan tomorrow, to rule out anything "serious" rather than go to the ER. But even so, it's a risk not getting it addressed tonight.
But the thing is: Mom is going to the hospital every week, whether for appointments, tests, transfusions or because of a fall. I don't blame her for being tired of it. And we can't rescue her from her failing health.
As much as I'd like for them to do less CT scans (I hear they're dangerous when overused) -- the truth is, Mom has what? 1 year? less ? more? of living. The Drs have no idea.
I feel sad that she's on so many medications for so many ailments, but my hands are tied. I am not allowed to conduct my mother's affairs. This is up to the Medical Advocate and my sister. And without the psych meds, my mother would most likely be a real agitated mess.
So, what to do? She's still ambulatory. Dunno if at some point they're going to stick her in a wheelchair for safety reasons. Can't imagine they would -- because sitting is the death knell for a lot of elderly people.
We could perhaps "proof" her apartment better?? But tonight's fall was in the outer hallway in the building itself. Not her own apartment. So there's no safeguarding her there.
I feel sad for her. And I have to learn to accept that this is how it goes. Not much that can be done, I don't think. I'm open to hearing any of your experiences re. this -- suggestions, ideas, thoughts. But there's little that I can enforce or do. The only thing I can do is make suggestions to the Advocate and my sister.
Thanks for listening. Sorry this is so long.
((Hugs))
A tough question I have for you is, do you have a DNR on your Mom? The AL my Mom is in will not take her to the hospital each time she falls because we have a DNR on file and they only take her when there is no other choice. Otherwise, the nurses check her and if there seems to be no major damage and she doesn't seem to have a concussion, they keep her under a watch and don't bring her to the hospital. She's fallen 6 times in as many months and was only brought to the hospital once for a CAT scan when she complained of dizziness.
Every time my Mom has fallen, she's hit her head and there seems to be no way to avoid it, since she's fallen in every area of the building, so I can't think of a way to "proof" her apartment for falls.
I would think if there is a probability of pancreatic cancer, she would be a definite candidate for Hospice and I hope that works out for you, because she will get the care she needs there.
Good luck and keep us posted on how the evaluation goes for it.
I know it seems normal to want to give mom more care and more safety but that is only going to prolong her life. Nobody dies from dementia, they die from the falls or bed sores or infections that are secondary. The unspoken rule is to not do too much either to prevent or to treat. So waiting on the ct is probably a good idea.
My brother and I have had this discussion several times. It's easy to say that we will do nothing but when the moment comes its hard to sit back and wait. So how you are feeling is perfectly normal.
I found out that POA sister and Medical Advocate are looking to "override" this procedure re. Mom. This way, it's not a constant crisis/revolving hospital door every time Mom face plants. Sigh.
Tigg13 -- Thanks for enlightening me -- I didn't know that no one dies from dementia. That "The unspoken rule is to not do too much either to prevent or to treat. " Hmm...
I saw the Medical Advocate today while I visited with Mom, so we talked. I suggested that we get Mom one of those Necklace alert systems, so if she falls ("Help, I've fallen & I can't get up!") the staff is notified. They have these necklaces for the residents who are wheelchair-bound.
Another thought is getting her some chairs with arms. The ones she has at her kitchen table do not have arms -- and she struggles to get in & out of them.
Additionally, I saw she "slid" her sneakers on halfway, crushing the heel, as she was not lifting the velcro straps to get her foot in the shoe.
In the name of "comfort" and dignity, it would seem only fair to give her sneakers that are easier to get her foot into. And a couple of chairs for her table, where she can use the arms to push up on. And that "alert" system -- so she doesn't remain on the floor half the night.
Sigh. I appreciate all your feedback, you guys. As my Aunt Belle used to say: "the Golden Years -- they're not so golden."
((Hugs)) Thanks.
Hospice has it's own rules for accepting patients. You usually have to have a terminal diagnosis. Then there is outpatient services where they will send someone to your home periodically to check on you. Or there are inpatient facilities for people who require medical care, even though it is only to ease their suffering.
So I am confused. What reservations does your sister have? And who told you to look for palliative care? There are different hospice providers so maybe that is what they mean?