karyll Asked January 2018
My mom was diagnosed with advanced dementia. Anyone know how long she can live?
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I'm confused. She has so much pain. We try to make her comfortable.
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What is she in pain from?
Does she have a terminal disease? More information would be helpful.
Impossible to know how long to live without knowing what's wrong besides dementia.
What does the doctor say?
Has she started on hospice? They can help with the pain. MD can refer her.
I agree with Sue that more info would allow us to help you better.
With any disease, it is difficult to predict the life expectancy. But I would absolutely encourage you to pursue hospice. Their focus is on comfort and relief of distressing symptoms such as pain is a priority. Also, you can get the emotional assistance that you need as you try to help your mother.
Best of luck,
Margaret
I'm remembering you posted a question before about having a visiting nurse say your mother is not"qualified" for hospice. I replied to that post encouraging you to contact your mother's MD. Also, you can call hospice providers in your area and ask for an evaluation. As I said in my other reply, as far as Medicare/Medicaid reimbursement goes, you need her MD to agree to Hospice and for the Hospice MD to accept her.
Please do not stop investigating hospice because of what one visiting RN says.
Best of luck,
Margaret
What is the pain from?
Have you called a Hospice organization to evaluate her, or have you talked to her doctor about Hospice? Please let us know, we want to help.
Have you discussed alternate methods of giving pain meds to your mother? Patches, sublingual (between her gums and cheeks) ? You’ve never told us where and why your mother is in so much pain.
Can you come back and give us more information regarding why your mom is not qualified for hospice, as you told us several days ago?
What have you tried so far & did it work? Are you in contact with your mom’s doctors and what have they suggested?
I know from your prior posts that you said you were more or less overwhelmed & exhausted. It is hard for both the patient and family when your loved one is so sick.
same thing. Depression and very smart. Took her to numerous drs. including physiatrists and councilling and nothing worked. She only continued to get worse. Couple months ago she collapsed at home and was taken to hospital by ambulance. Was told at this time she had advanced dementia and we had visiting nurses for only short time, maybe weeks. They said medicare would not pay more. Not confirmed but we think she may have suffered a small stroke when she collapsed.
She now wakes up with such severe pain and my brother and I have to help her to sit up in bed and take some pain meds, Tylenol arthritis. Also have some form of Tylenol with
codeine but only use at night and have found to be constipating. Dr doesn't want to give
anything stronger. We are new in area and hard to find a good dr. At hospital dr. said
nothing would help memory and seemed like nothing could be done if damage to brain.
My mom has other ailments, high blood pressure, bad colestoral?, diabetes, takes a blook thinner. Visiting nurses said at first if we want to take her off all her meds then she would qualify for hospice as mom at times doesn't want to take meds but we sit with her till she takes them as we think she would die soon without them. We love her dearly. Then vna said even if not taking meds, which we don't want to do, she would not qualify anyway. They said she just doesn't qualify. We don't know how much longer she can live like this, yrs., months, we just don't know. We are taking one day at a time and each day is extremely hard to deal with. She doesn't want a nursing home and we want her home as long as possible. Don't really know where to turn for help as don't know if there is any. She is close to 90 and people have lived much longer than this.
I am extremely heart broken as she has been the best mom and she doesn't look her age. I can't stand to see her suffering from the pain. She is better after meds start to work until she needs more. All she wants to do is lay down and watch tv, but usually ends up sleeping and when she does watch tv she doesn't really understand much. She requires 24/7 assisted care, which is very difficult for us. We get a few hours care a week which allows us to run out to do necessary things like grocery shopping.
I feel so much anxiety at times and don't sleep well. Very hard to see her in this condition. Have tried over the counter lotions and creams with little relief.
Was told hospice is only for when death is in 6 months. We don't know.
Don't believe any cure for advanced dementia. Don't know if anything else I can say that matters. Any help appreciated. Thank you all.
Collapsing at home can happen for many reasons; the one that comes to mind is perhaps a heart problem called a “heart block”. There is treatment for this. Or low blood pressure- do you check this at home? You can purchase a BP machine at Walmart, etc.
Mom needs a good look over. Med review, lab work, EKG, etc.
Of course her quality of life should be considered after all this testing, etc.
She or her body may be tired from living so long.
Giving Tylenol for long periods of time can be detrimental to her kidneys & liver, so be cautious - no more than 2gm (2000 mg) of Tylenol daily.
Is mom lucid, oriented to time & place? Appetite ok? Urine output ok, no weird smell or color?
So many variables but I would start with a good geriatric physician. Doing nothing can be detrimental. At least the family will be able to make educated decisions about her care going forward even if it is hospice. You don’t want her to suffer unnecessarily.
I’m sure she is a wonderful mother, and yes many have lived longer than that, but realistically with her dementia, collapsing, etc it may be her time.
Blood thinners can be dangerous too especially after a fall. She can be having a slow bleed in her head that can cause changes in her mental status. She should also be having lab work regularly if she is on warfarin.
Think quality of life af her age.
Do an internet search for a geriatric physician and if she is on Medicare you will have to do some calling to make sure they accept Medicare (or Medicaid) patients for that matter.
Good luck to you!