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Mom has end stage renal disease, clinical depression, and dementia. The dementia is progressing at a rapidly accelerated rate due to her kidney disease and surrounding issues. She sleeps a lot, falls once or twice a week, can no longer walk more than a few steps (and usually needs assistance for that), has little to no appetite, and is very weak, depressed, confused, has short-term memory issues, and is sometimes pretty zoned out. At times, she's almost catatonic, even while sitting up (like, not even hearing directions even when I repeat them many times). Sometimes I need to walk her through very basic things, like every single step of getting from the car seat to the wheelchair ("Put this hand here, now move this leg here," etc.). She has also started to have mild delusions in the hours after dialysis, but they don't last too long, and she seems to find them more entertaining than troublesome.


Just as recently as last night, she had several tests and scans to rule out stroke, brain injury, dehydration, and infection.


The nurse on the renal ward told me yesterday there's nothing they can do to help beyond her renal care, and that I need to get a referral to geriatric psych from our GP, and then get mom some meds for her dementia.


I don't know anything about what to expect from geriatric psych. I gather they will do a cognitive assessment and probably prescribe some meds, but I don't know much about the meds. I don't want her to take something that will make her worse or harm her health! Can anyone tell me what I might expect, or what kind of meds are available and what the pros and cons are? (For example, I've heard that some meds only work for a limited period of time.)


I'd especially appreciate hearing about people's personal experiences with medicating their loved ones' dementia.


Mom is palliative - meaning the doctors think she has less than 6 months to live, but can continue treatment until she is ready for hospice care. She has been on a low dose of Zoloft for 20 years for her depression, but I think it stopped helping about 5 - 10 years ago. In her alert moments, she is very interested in something that would help her with her "confusion."

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Don't forget being women. How many of those clinical trials have included women? I remember not too long ago reading about heart medicines that were only ever tested on men.
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Golden should we form an oldest club?
Still does not excuse not enrolling those over 75 in clinical trials. Us olderster have just as much right to benefit whatever comes on the market.
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cwillie, I'm sorry for suggesting that 75 was 'oldest old'. My brain and my typing are often at odds with one another. What I meant to say was that studies are seldom done on those over 75. You are correct in that 85+ is "oldest Old"---which my FIL is. :)
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Oh my. I am the oldest of the old...and some days I feel like it.
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Since when did over 75 become "the oldest old"? My understanding is that term applies to those over 85, and now that centenarians are becoming almost commonplace the age limit should be going up, not down.
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How old is your mom?
My FIL’s Gerentology group has a policy to discuss (with patients and family) to let us know that anyone over the age of 75 has not been studied in drug trials. There is little to no data regarding drug interactions and side effects of any medications for what scientist call “the oldest old”.
Our group of doctors do not suggest Aricept and its cousins to anyone over 75 because the risks and side effects FAR outweigh any minor benefit that might be had.
I’m sorry to hear your mom is suffering so. I know there are often times that I wish, for my FIL’s sake, that he wasn’t still aware of all he has lost in the last year mentally and physically.
I hope you have a caring doctor who will be honest with you. I hope you get some answers and your Mom gets some relief.
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Dori you mention that your mom has end stage renal disease. My mom is almost there and we just met with a renal specialist. Her sleepiness and what you describe was exactly what the doctor told us will happen. Memory issues play a part in this. The medications that were mentioned above may prevent increasing memory loss but may not restore anything. Plus if they need to be excreted by the kidneys then no, she cannot use them. Dialysis is not an option for my mom at age 95 because with her memory issues she could dislodge a line by not sitting still which she could bleed to death if that happens.

My MIL went to a geri psych. There were certain meds that were available for behavior issues, but again each med will have to be determined if it is excreted from the kidneys. The geri psych was able to recommend which Medicad nursing homes performed better than others and how to make the applications.
Otherwise the other recommendation that I can make for you is to also look into hospice because you may be overlooking something obvious
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GA - mother's mobility is so compromised that she cannot put in her own hearing aids, so the staff do it. They lost a few in the NH she moved into in October, so they decided that only the nurses, not the aides could deal with them. The nurses put them in in the morning, take them out at night and put them on her meditray (for meds) and lock them up in the nurse's room. This only started a few weeks ago, so I don't know how well it is working. In the ALF, the staff did it too and they only lost one in 2 years. You could discuss with the staff placing them for your dad . Mother is quite deaf and feels very isolated without them.

Mother is hanging in there - heart, lungs, kidneys, liver etc. are all doing well. Thanks for asking. She is declining cognitively, very slowly, but still recognizes us. She has good colour, can manage feeding herself a bit, but they help her every meal. Her muscles have to been weakening continually due to the VaD, but I don't see anything different from last year.

I have a few artificial white orchids in mother's room. Latterly they were her choice for plants. Two walls are a soft sage green so they go well. We put some of her "Haiti" paintings, and others, which are colourful, on the walls, so her room looks very nice. Thinking of sending an arrangement of fresh flowers for Easter. She loved the lacy hydrangeas.
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Golden, how did you solve a hearing aid problem? We've struggled with this for years; they're hard to get in, hard to get out. It would make such a difference to Dad if at this end of life stage he could hear his care staff and visitors. But with a compromised hand (radial arm saw accident), it's hard for him to get the hearing aids in and out of his ears. I've hesitated to ask the staff to assist, and I'm actually not sure he wants to hear everything being said at this stage of life anyway. But, any suggestions on the hearing aids?

Also, it's interesting that you mentioned a pot. Back in 2003-2004 during a long hospitalization and rehab, one of the 5 different placements was at a long term care hospital in Ann Arbor, with the U of M teaching hospital, and a nonprofit hospital with very high standards.

I was advised not to bring in live plants b/c of the bacteria in soil. So now I just bring in clean artificial plants.

And how is your mother doing these days?


Dorianne, try the artificial plants; they don't require any work, especially watering, so there's no obligation for the staff to not want to care for them. And if they fall on the fall, just pick them up and dust them off!

I think just the splash of color might be noticeable by your mother. I've found the best selection of artificial flowers is at Michael's - a craft store here in Michigan. There's so much it's hard to choose, and the varieties seem to be wider every year.

Several years ago I also bought some polished glass pieces (probably manufactured and not water polished glass) that I use for the larger vases. The stones not only hold the flower stems in place, but they can glimmer in the light if placed in an area that gets sunshine.


As to the Aricept, as I recall the doctor didn't give any explanation as to the side effects he thought dangerous. He just said that he wouldn't prescribe it b/c of the side effects.
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Dorianne,
My mom was prescribed Aricept (Donepezil) for Alzheimer's when she was in (I'm figuring) stage 3.
In 1-1/2 years she progressed to stage 5, when I had to have her reevaluated, decleared incompetent and later put in a Memory Care facility.

In my personal opinion, I don't believe the medication did anything. It didn't seem to lessen her confusion nor slow the progression of the dementia. (Progressing 2 levels in a year and a half does not indicate to ME that the medicine worked.)

In the past I have asked if another medication would work better and the answers were to just keep her on the Aricept. She is still taking it.

Mom had been on Ativan (anti-anxiety med) for many years. Recently the doc took her off it. When she lived with us, she was much more agitated than when she was at MC and we went through Seroquel and another med. Nothing seemed to work. Because we couldn't get her mentally stabilized, we had to send her back to MC. She's happier there. The doc now has her on
Remeron (antidepressant). She's more awake and has a better attitude.
At 95, she is at the end of stage 6 and has leveled off.

All you can do is give the psychiatrist her symptoms, s(he) will examine her and probably prescribe medication. Sometimes there are unwanted side effects. Sometimes the meds don't work and sometimes they do. It's a crap shoot. Usually you will have to go through a couple to find one that gives the desired effects.

I'm sorry you and your mom are having this trouble. Hang in there.

Remember, you don't have to have her take anything that has bad effects. You can refuse any treatment for her at any time. You can look up any medicine at Drugs.com. Good luck.
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glad - I'm not anxious, I just want to have lots of information so I can push back against a pushy doc if I need to. Information is power! :-) It doesn't really matter if a med only works for a few years, as mom probably has less than 6 months to live. That also means we don't have time to keep going back to a doctor to change a scrip. So I want to do all I can to get it right the first time, and make my mom as comfortable as she can be.

GA - do you remember what kind of side effects? I don't think we'll ever have a living garden in mom's room because she never opens her curtains! Lol. I've just been buying a 4" pot of live flowers every week. But I might see if I can find some of the better-looking silk flowering plants....she's so sick, she might not know the difference. I think the hardest thing for mom about giving up the house was giving up her lovely garden. Even when I was young and we lived in an apartment, she filled the patio with overflowing pots and hanging baskets, every year without fail.

golden - (edited to add this because I missed your comment!) Part of the problem may be mom's dementia has never been narrowed down to a type.  All that's ever been done is ruling out stroke, brain injury, etc.  So I have no idea if it's Alz, vascular, or "metabolic derangement," which is a phrase the nephrologist used once!
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(((((dori))))) these are scary times. The geri psychs have good knowledge about what works, but, as glad said, it is individual, so there may be some trial and error. With your mum it may be complicated by her renal disease. Mother was put on risperdal which helped her enormously, Now, a couple of years later, they have discontinued it with no obvious effect. She is also on an antidepressant. She has vascular dementia - different from Alz,
GA - lovely ideas too brighten up your dad's room. I have the disadvantage of being at a distance, so flowers/arrangements have to be sent which is a different from bringing pots in. Now that the hearing aid problem is solved, I hope, I want to bring an old boom box that was my youngest son's and some cd's for mother. The nurses have said they will operate it. It is large enough it should stand up to wear and tear.

Relax Dori, I think they they know what they are doing, The geri psychs we had both were excellent, sensitive, caring...
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Dorianne, I agree that if her suffering can be abated, it's worth the effort and/or the meds. There comes a point when comfort is the primary concern. We're reaching that point.

If I can't find the little portable CD player, I'll be looking for one as well. I'll let you know if I find anything.

I think I'll bring some more flowers to Dad's room as well. We may have a little garden in there by the time I'm through brightening the room.

As to Aricept, I recall asking one of my mother's internists about it. This was back in the late 90s or early 2000's. I'm not sure if it was before she broke her leg or afterwards. Mom was sundowning at that time and it was confusing her, and saddening us to see her in that situation. The doctor said he wouldn't consider using it b/c of the side effects.
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Dori, try to relax, you getting anxious won't help. My mom was on namenda for probably eight years. They say the benefits from it will only work for a few years. I didn't want her to stop it as "if it is not broke, don't fix it". My mom could not take aricept, diarrhea even worse than normal. Meds are a funny thing. Some will work for some but not for others. It is trial and error, forever. Adjustments, additions, subtraction a couple times a year.

If you think about it some take the drugs, they work or not. How do we really know it is the med that is causing any improvement or decline. If you feel anything new is helping mom, that is great! And definitely try whatever the doc thinks, if confusion gets worse, let doc know, it could be a reaction to the med.

Dori, I am so sorry you are going through this. There is nothing harder and the disease will continue to progress. How long ago was your mom diagnosed? I am wishing you the best and know you are providing mom excellent care and she is very happy you are with her, I am sure.

And one thing to remember, shoot, I forgot!

Now I remember. Many meds that are prescribed have a black box warning that the med may cause additional risk to the elderly for a variety of reasons. Many meds regardless of the carry the same warning. My mom took Seroquel, it carries black box warning, but it helped her tremendously. You need to weigh the benefit/risk for their well-being.
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Oh no, glad! Are you sure? I was just reading this on www.alz.org:

"The U.S. Food and Drug Administration (FDA) has approved two types of medications — cholinesterase inhibitors (Aricept, Exelon, Razadyne) and memantine (Namenda) — to treat the cognitive symptoms (memory loss, confusion, and problems with thinking and reasoning) of Alzheimer's disease. There is also a medication that combines one of the cholinesterase inhibitors (donepezil) with memantine called Namzaric."

source: www.alz.org/alzheimers_disease_standard_prescriptions.asp

I was hoping to glean info from people's personal experiences with some of these....like whether they actually work!  (I remember reading somebody's comment that one of those meds made their LO's behaviour worse, but I can't find it now.) 
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Dori, there isn't anything that will help with mom's confusion. There are med options though to ease her anxiety. It was the anxiety that was very hard on my mom and everyone that came in contact with her. Do not think of the meds as being harmful to her. Just remember the ultimate goal is to keep her comfortable.
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GA - Thank you.  I've been bringing in little pots of flowers from the garden centre - that brightens mom a little. Also I was going to ask my brother to hunt down an inexpensive portable CD player....he likes doing that kind of stuff, and we could take it with us to hospice house when the time comes. I know from losing my dad and stepmom that hearing is the last thing to go.

I'm going to go ahead with the geriatric psych meeting, as my mom is depressed and troubled by her confusion. So anything that might help ease her mental suffering would be beneficial. Even if it only has a placebo affect!
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Dorianne, I don't have any suggestions but wanted to offer my support and sympathy for your mother's situation, and for you. I've been thinking of what I can do for my own father as he enters the last stages of life.

He loves red, so I made a bouquet of red roses with small ivy vines and brought it to his room for him. That produced a smile. He also likes receiving cards, so I'm going through my stash and will create a group of them, with added comments. Some years ago a family member was ill, I was in a creative mood, so I used my massive collection of rubber stamps to create some humorous additions to land and sea animal cards. I'm going to do that for my father as well.

And I'm searching for the old portable CD player so I can bring some of his favorite CDs, polkas, mariachi bands, and of course Strauss waltzes.

I hope you find something that helps your mother, but it may just be that these end of life situations are depressing and unsettling and meds won't help....just my opinion though. I'm sure others who have more experience can offer better suggestions.
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