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BunnyIL Asked September 2013

What can I expect as dad's dementia progresses?

Dad was recently sent home after spending many days in the hospital, then many more at a nursing facility for post-op rehab.. He had early-stage dementia when he left, but now that he's home, his condition is much worse.. He has been home for 2 weeks and shows signs of depression and extreme confusion..

I am hoping he adjusts, but how do I know if he is going through a period of adjustment or if the dementia is getting worse..? I feel he no longer wants to be of this world.. What are your experiences at the end of the disease, and what can I expect..?

Thanks all, this is very helpful and therapeutic..

MaggieMarshall Aug 2014
It took mom a month to return to post-hospital/rehab normal. She's there now though. They started her on Namenda when she was in the nursing home. I discontinued it when she got back to my home. The side effects are confusion and sleep disturbances (among others). What?? Really? No. She takes ENOUGH meds.

Dementia is progressive. And some days (and times of day) are worse than others. Routine and a serene environment seem to work well for mom to help her be the best she can be. I remind her daily that her mind is tricking her . . . at this stage, she gets that. Makes it a lot easier.

Everyone's dementia symptoms are different. Find a solution for each problem as it arises. This is a great site to get that kind of information because so many of us are walking the walk.

Use this time to decide what you're going to do when it gets too much. Investigate your options. Get a complete handle on his financial situation and what extra care will cost - as well as whether or not he can afford nursing home care or assisted living with extras. This will give you peace of mind. Guaranteed.

Lmarieweilert Aug 2014
My father is 85 and was diagnosed with dementia a year ago. He is still driving and self reliant to a point. Finding we are having to do many things for him and my mom now who I think also has dementia but not diagnosed yet. I ask my father if he is taking his "brain pill" every day. He said no, only once in a while (which is the reason, I believe, he is getting worse and struggling formulating words? So I now send him a message on their presto machine daily reminding him to take the pill. He is in denial that he has dementia and he says the pill makes him sick but he can't tell me how it makes him feel. I don't know the name of the pill but can use some advice on medications that have been successful? I will be making another appt for him with neurologist. Thank you.

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pearlandharold Apr 2014
Both of my parents have been hospitalized several times in their 80's. Each time that they were in the hospital for a week or more there was a period of up to several weeks when they had difficulty adjusting to being home - usually just a loss of familiarity with their home surroundings and home routines, but sometimes also a decline in their physical and mental functioning. Sometimes they got back to their baseline functioning after a few weeks, sometimes the loss became permanent. My mother did not adapt well to her decline, and became very depressed about her physical limitations well before her mental decline became apparent. I took her to a geriatric psychiatrist, who started her on Lexapro, (not an anti-depressant, it is a mood-stabilizer), which made a great improvement in her emotional outlook. A few years later he added Namenda in hopes of postponing memory-loss. It did not help with memory in her case (each patient may respond differently), but it did help her emotional state, by reducing her anxiety and her fear of giving control to her caregivers. We think that it was the combination of Lexapro and Namenda that has made her more cooperative and more able to adapt to the changes in routine that the changes in her health have made necessary.
My father passed away several years ago, due to a drug-resistant strain of pneumonia. My mother is well and mostly happy, although her dementia has been progressing slowly. Her mental state tends to be quite good in the mornings, but her memory and her understanding tend to fade rapidly after lunchtime along with her energy. Some days she is quite sharp, others she wants to nap most of the day; it is quite unpredictable.
I am lucky to have found very good home-care-aides for my mother, who are well-trained and have many years of experience in this work. We try to maintain a regular routine for my mother as this helps her to feel that she knows what to expect all the time, and she is even able to "give orders" by "reminding" her aide what is next on her daily schedule. My father was given Aricept to help with his memory, but in his case it didn't seem to help - each patient is unique. I still recommend having your father seen by a psychiatrist and/or a geriatric specialist, so see which medications might be most effective at improving his emotional and cognitive well-being. Sometimes it is necessary to try different drugs, each for a month or more, before finding the one drug or the combination that works best.
My experience is that caring for someone who is in the advanced stages of aging is a bit like caring for a small child in reverse. As with children, the changes are not steady and not predictable; just when you think you have learned what to do, they change and you have to adjust to their changes. Often it is a day-by-day process; sometimes it can be several weeks or months before you have to deal with the next change. My own experience has been that the most difficult time is when the dementia has become severe enough for the patient to be aware of it but still mild enough that the patient is struggling to deny it or fight it. In the later stages, most patients become calmer as their memories become more limited, and they becomes accustomed to relying on others. Much as a one-year old usually allows themself to be cared for, while a three-year-old will struggle to be independent.

jeannegibbs Oct 2013
Do you know what type of dementia your dad likely has? That can help somewhat in knowing what to expect, but basically you are in a wait-and-see situation. Deal with whatever symptoms show themselves.

In our ten-year journey with my husband's dementia (Lewy Body) he was hospitalized 3 times. Each time he had to first recover from the ailment and then recover from the hospital experience. In took many weeks. Each time a well-meaning medical professional told me not to expect him to fully recover to his former baseline. And each time he did recover to his former baseline. You won't know what your dad's case will be until it plays out.

Dementia is progressive. It gets worse over time. Sometimes events can trigger a faster decline, but sometimes that kind of decline is temporary. In some ways it might be easier if we knew exactly what to expect, exactly how long the current situation would last, and what will come next. But that is not reality -- at least not the reality we experienced.

Continue to love your dad, to make him comfortable, to work toward his happiness. Take each day as it comes. That is all we can really do.

orangeblossom Oct 2013
Dear Bunny, as we age it becomes harder to recover from our ailments, especially surgery. Even the anesthesia can wreak havoc with the brain in the elderly, and it may weeks for the after-effects to wear off. As other commenters have said, all the medications in combination may also be causing some mental confusion, and that is where the pharmacist may be of some help in advising which ones to take together or at different times. It's a combination of a lot of things. The anti-depressent should help, but some of them take a few weeks to notice a difference. All I can say is be patient and pray he makes a comeback soon.

maxineC Oct 2013
My mum.is 69n.has.been diagnosed 5yrs.ago with vascular dementia. Somedays I.get a glimpse.of.the mum she.was but other days she becomes.very angry n aggressive and.sys some.dreadful nasty things. But I.know.its not really her its her illness. In recent.weeks.she.has.lost bladder n bowel.control nis extremely unhygeinic. She.wont allow anyone.in to.belp.wash her n.wont.let.me.do.it. She.hasnt.eaten for.weeks n to.make.things worse is an alcoholic. She has no.quality of life n drinks n sleeps.most days n asks.me.to.make.a.prayer to.God to.let.ber die. Its heartbreaking n I also.have mental health issues. I.sometimes.just sit on her bed.n.stroke.her.face.n.hair.til.sbe.falls asleep. I.wouldnt.wish this.illness.on.my.worst enemy. Godbless everyone.out there who.r carers to.these ill people. Xx

BunnyIL Sep 2013
Thanks, all.. I did get him a prescription for depression.. Hoping it kicks in soon.. I know Aricept is hit or miss, but it is the one pill I stopped when he got home.. Might put him back on it for a while to see what happens..

assandache7 Sep 2013
The elderly have a tough time recovering mentally from surgery. It took my Mom about 2 wks after gallbladder surgery at 87 yrs old...Hopefully he'll come around soon.. Also like said if he's on new Rx's maybe they are adding to his confusion...

Jinx4740 Sep 2013
Make sure his medication isn't causing his confusion. There are lots of drugs that can cause trouble. Check with his doctor and also with a pharmacist.

If there's no drug interaction problem, Ask his doctor about an antidepressant. As long as he is still alive and aware, try to keep him somewhat happy.

It must be so sad and scary to see what he's going through. Best wishes.

JessieBelle Sep 2013
My mother has moderate dementia. The days are never completely predictable. Sometimes she is almost normal, then other days she is completely out in left field. I never know what mother I am going to wake up to or how long she will stay that way. The first few stages of dementia are not so bad as long as you can keep your irritation and anger in check. Comforting goes a long way. For example, I say things to assure my mother that I will keep her home as long as I can. I let her know she has enough money to live as long as she is home.

It is hard to predict the course dementia will take. Some people become happy and easy to live with, though forgetful and confused. Others take the opposite route and become frightened or angry. Some people progress quickly, and others don't. It is difficult to tell you what to expect. You just have to play it a day at a time.

It isn't unusual for people with dementia to become worse when they are in the hospital. If he is very depressed, talk to his doctor to see what might help with this. I hope this straightens out soon. Let us know how it goes.

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