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Mom and Dad live on their own at home. Both are in their 90s. Dad was diagnosed with "dementia" 6 months ago (actually AD, but his doctor wouldn't come right out and say it). We know it had been coming on for years, but his doctor wouldn't do anything until my sister and I brought up the subject with him. Dad is now on Namenda and Aricept, which we think may have slowed the progression of his symptoms (constantly repeating himself, forgetting something we discussed just moments ago, fretting about totally inconsequential things, inability to plan even simple tasks such as deciding what to wear or performing any calculations, getting confused and disoriented in familiar places, etc.)

I've tried explaining to Mom that Dad's condition will eventually get worse and that she should be prepared to need more help or to move into assisted living. She is the primary caregiver. She now says Dad is getting much better. When I asked how, she says he is not repeating himself any more. Really? He's done that for several years. This I gotta see. My siblings and I all live several states away but have been spending more and more time with them over the past year. I'll be traveling there in a few weeks.

Anyway, is it possible to really see a reversal of symptoms with Namenda and Aricept? Or is she just building a case for them to continue living at home? They have long term care insurance and Dad is surprisingly open to relocating (although this varies depending on the day), but Mom stubbornly refuses, insisting everything is fine. I think the constant demands of shopping, cooking, cleaning, laundry, etc., plus caring for him keep her exhausted, and the situation is not sustainable. She gets some household help but it's minimal. She even tries to clean the house before the house cleaner arrives. Then she has to go lie down. Is she just in denial?

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Is it possible to get them the help they need so they can stay at home longer? LTCI sometimes covers that. Don't people get confused and go somewhat downhill after a relocation, even to assisted living? If their home can be made safer, and they want to stay in their home, is that possible?

I expect to end up in a NH, but I hope it happens after I am too far gone to care!
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When my grandmother stopped asking questions it wasn't long before she stopped talking altogether. I would be worried about that if my mother got quiet and gradually stopped repeating herself and arguing with me about what she remembers different than I remember it.
Mom is on Namenda and her doctor, who has helped her a LOT in recent months, says she will not get better memory, but hopefully won't get worse as quickly.
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Great to always plan ahead, burial trusts are extremely helpful as well.The best place to go for answers is the Department of Aging and Disability. They are familiar with seniors and the many aspect/needs that will help you help your parents. Medicare will pay for house cleaning and visiting nurse for the disabled, check it out, your father will qualify with a doctors order. We purchased a lock box to keep car keys and medicines in to protect the dementia patient. Make sure your mother does not allow your father to drive. In the mean time do what you can to set up house keeping so it is simplified and safe. There are services that also offer grocery shopping. Make a list before you go the Dept of age/disable, they can provide you with contacts. There is also resource information at your local senior center. It is difficult to move parents. We had to move our parents from Ark. to Wisc. then mom went into Alzheimer unit within 4 mos. If they can get care and services at home, I would let them stay there as long as possible. Nursing staff is usually good in the nursing homes, but the basic needs staff isn't as efficient as one would like. It has also been noted that patients deteriorate faster when taken from there home, I think that is what happened w/my mother. Best wishes.
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I understand Darcy 123
My mom heard something on tv and thought it was a story about her roommate. And when she made the comment to a nurse aid, her roommate was not happy. That's the story I heard. I heard it the same way several times. My mom comes up with these wierd stories. She is wheelchair boun cause she is a fall risk, which she says she falls. But don't know the truth of that, cause she can't get up by herself. And she says she gets up by herself cause it takes to long for somebody to get there to help her. They become impatient in nursing homes. it seems that everybody needs something @ 4pm in the afternoon. And there's only one aid and the rest are feeding those that need to be fed. Nursing homes have there staff issues.
Take care
Equinox
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RuthAO-As a nurse, it is a good thing to not expect miracles with dementia. However, like I said previously, Aricept, Namenda and Exelon are NOT going to stop the progression of his dementia, but just take each day as it comes. Your parents sound lovely, having taken care of each other for so long and your mother still likes that role. It is very important to maintain her role as caregiver to her husband, and you adult children can ASK her what she would like to do. Your dad's symptoms show he cannot be left alone (and if he was a veteran they can apply to the VA for Aid and Attendance pension). Yes, planning for the inevitable is always a good idea since dementia does not improve. Best wishes for your family!
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Chicago1954,
Bless you my friend and hugs for being there for your parents. it's a good feeling helping those that help themselves. We caregivers have a calling to help others, not just our family members but we reach out and help out.
Take of yourselves also, cause you are important to your mom and dad.
Equinox
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I am in a similar situation. My dad swears my mom is no longer confused????? She has been telling tales of her childhood lately... but recent events are still a hot mess! My parents have been married 61 years, but she swears there are 3 men, all with the same name as my dad who she is married too. They are different ages, etc. She knows EVERYONE on TV. She doesn't know who I am most days. I could go on and on with the goofy stories she comes up with. (They are sometimes quite funny... I say laugh or go crazy!) I think he really wants his wife back, that and he is very hard of hearing. I think it is part of the grieving process, grieving a very real loss, as real as a death! They are in denial. :(
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Gas being left on and water running those you know are emergencies, you could shut the gas for the stove off, maybe they could use a slow cooker, it is really up to you, if you have had enough.
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It sounds like he might have had the normal forgetfulness of aging and the medicine has helped. A dementia diagnosis can be wrong. Many doctors are hasty to make one so to prescribe meds and therefore get in more doctor visits they get paid for. If the doctor did not say Alzheimer's disease, then that is not what he is diagnosing. Perhaps one of you could move closer and all could help finance more help for them.
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Sylbert, that is exactly the scenario I fear. Mom and Dad live in an old 2-story farmhouse. We have tried to arrange all their living space downstairs, but they find reasons to go up and down those stairs every day. (They say it's good exercise!!!) I have frequently found water left running and cooktop burners left on--always after Mom was the last person in the room. Again, I think she's so tired and stressed, she just get weary and forgetful. She says her wishes to remain at home are about quality of life. But I think it's about a quality of life they used to have there--not what it is now.

So my resolve is to help them however I can, to plan for what may come, and to help prepare them for that. I would love to move them to that beautiful independent or assisted living facility (it has both) that we visited a few months ago. People there looked happy, relaxed, and busy with their chosen activities. What you said about your mom worrying how it looked to everyone else sounds familiar. I think my mom likes being able to tell people they still live on their own at their age.
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Mom & dad both 92. Dad took airicept for yr.It only maintained his mental status & he slept all the time. Mom always felt they were maintaining well @ home because we did all the appts. shopping, cleaning, meds. etc. Mom fell down the basement steps last fall fractured skull, broke c7&t1 her recovery nothing but remarkable. She wanted to return to live with dad. Problem being he can't care for her. When she fell last fall she laid for hrs, because dad did not hear her calls for help nor would he have been able to assist her as he can't take care of
Himself. Today they live in assisted living wholeheartedly is now under hospice care the Dr. stopped all meds. Including airicept, we have more lucid moments with him off the airicept now. Please consider moving your folks before they fall and are incapable of helping each other. Mom wasn't happy with the move
Dad didn't care as long as they were together. Mom always worried how it looked to everyone else. It took guardianship to make the move, but now they are in a safer environment then their own home. At home burners were left on, water left running, calls for help unheard
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Great answers ALL! My experience mirrors all the examples given. One day at a time....
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There are good days and bad days with dementia/Alz, she may have gotten used to the new person, which is a good thing, some of the medications, do stabilize mood swings, as long as she is in her same routine, she may feel she can handle it.

After all, they have been together, through it all and as long as he is not too bad, Alz. can progress slowly and they may not need to separate.
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Moms always want to tell you things are better, from your boo-boo as a kid, to now.
Agree with her, cheer her, but come home soon and often. Whatever you see, make notes, talk with the MD. Mom pre-planned her funeral this year and took great satisfaction in having control over it. There will be good days and bad days, let her focus on the good ones and share it with you.
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It sounds like your mother is still very on top of things, asking for help with household things and POA update. She is probably able to handle things right now, but the concern is all the "what ifs". If you are already looking at assisted living facilities, ask if any in your area accept residents for a short term. I live in the midwest where we have variable winter weather and we convinced an elderly relative to move to AL for the winter months so that he wouldn't need to get out on bad streets to shop for groceries, etc. Once he had been there for a month and enjoyed the social activities and easier lifestyle (without cooking and cleaning), he decided that he really didn't need his house and the work that went with it. Four years later he is still there.

Maybe your mom would agree to a "trial period" in assisted living, and once she sees what it is like, she will accept the change. I think that many elderly think that AL is like the nursing homes of years ago where people exist in drab, shared rooms with nothing to do and no freedom. Today, AL facilities have one and two bedroom apartments, some with full kitchens and are more like living in an apartment complex. The main difference is that there is always staff available to help with the "what ifs".
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Dad clearly has dementia, but you do not have a specific diagnosis for what type. Drugs work differently on different types of dementia. For example, Aricept is more effective on Lewy Body Dementia than it is with Alzheimer's. Also some dementias progress steadily and others are characterized by good day/bad day fluctuations.

It is possible that Dad really is showing some improvement. It is also possible that Mom is engaging in wishful thinking. You'll be able to judge better when you visit.

Whatever kind of dementia Dad has, it will get worse over time. So having a contingency plan in place is important.

Does the long term care insurance cover in-home help?
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Thanks for the additional info. Going from my father in law's journey into dementia, we didn't find any meds that slowed the progress, only meds that calmed him. So, it could appear that he is better, to a wife, I think.

Does your Mom have a Life Alert or similar button? My mother's worked well, although there are ups and downs of all the companies, on-line. But your mom could push it for help, if she should fall or become ill. My MIL hid a lot of the daily problems that she was dealing with, due to her husbands alzheimers. We only realized that later.
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Chicago1954, I do believe she wants me to visit. Both my parents are very appreciative of all help my sister and I provide. She even has a list of things she would like me to help with, such as updating POA, taking her to a doctor's appointment, organizing some files, etc. Neither of my parents criticizes us, and I realize from reading some of the discussion here what a blessing that is. I have been taking a gentle approach--providing what information I can, taking them to tour assisted living facilities, fixing things that have broken, and generally sharing some of the household workload. Last time I was there I bought her a new computer and set it up for her.

I was really just wondering about the ability of Dad's medications to actually turn his symptoms around. If there is an improvement--even temporary--I'm glad to hear it. I'm just skeptical, I guess. And we still need to be planning for when things deterioriate.
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I have to wonder, if she even wants you to visit. My Mother would say that she did and criticize whomever was there, the whole time. I finally came to realize that she wasn't inviting these relatives, they were dropping in and looking for things that were wrong and "upsetting the apple cart."

Of course, you are right - that they need help and probably in a facility. But, you can't kidnap the elderly. I had to wait until Mother went to the hospital and then, make sure the doctor knew that she couldn't go home, alone.
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Thank you all for your responses. Many of your comments are exactly what is going through my mind. As for my mom getting sick, that has happened several times, with her then being hospitalized. This last time she was in the hospital for six weeks and then had a lengthy recovery at home. My sister and I took turns staying with our dad, since he can't be home alone (doesn't know what to do, gets in the car and drives places, can't manage a meal, makes very poor decisions, etc.). They are generally quite healthy, but I think these illnesses and hospitalizations may be caused by being old and by being tired all the time.

That's very good advice about making plans for whatever happens. We really don't know how this will play out--whether there is a gradual decline or a sudden crisis--but at some point things will have to change. I don't intend to burst her bubble about dad's condition, but I can't let her think things are going to get better and easier. I'm trying to locate some classes so she can learn more about Alzheimer's. She won't go alone, but I think she will go with me.
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First of all, Aricept and Namenda DO NOT stop the progression of dementia, but may give the brain a little boost now and then, and if you see some behavioral changes for the better then great! Your mom is doing what she does best, and that is take care of her husband "for better or worse". Let her do what she does, and eventually when she gets too tired, she will yell for help. I'm in the same boat with an 87 yr. old husband, but this is what my medical education has trained me to do and I will take care of him for as long as I can. Just enjoy your parents for the time you have them and relax...
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I don´t believe that there is a recovery, nothing has shown so far to be able to stop this diseases. Nor the advance of time or the waste of our organism.
I used an image: When we ate young, our parents raise us and we keep that image a a hand in front of us with their faces in the back. With time,in our minds, the hand is in the same place, but... they are not they are moving, and eventually are totally diferent persons. With nothing to do with what they were. So, what we see is a fantasy, a shadow a mirage. I would be convince that that is the situation with your mom.
I would suggest to try (and is very hard and difficult) to see the real situation, to move behind the hand in front of you. In that manner you can operate in the most humane and correct way to benefit both your parents and your family. Your children and other younger people around are observing carefully.
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She's not in denial, somewhere inside she realizes that she needs help. What she's in is a rut; a force of habit. Keep in mind that when you hear your mom say "I want to stay in our home" that what she's really expressing is not necessarily all about the house and the memories, it is a desire for their lives to be the way they were in the past - for them to be the couple they were. It's so sad because, even in your dad's current cognitive state, they could still enjoy a lot more living if she wasn't saddling them with the burden of clinging to her former life.
Definitely start your mom thinking about where she and dad will live. Explain how important it is to have a plan so that they're not scrambling in an emergency, with all their kids at a distance. Don't wait for a crisis!
On a side note, it makes me crazy when people have long term care insurance and then don't use it when they need it!! So many people suffer for the lack of it – just waiting until their money runs out and then being shuffled off to a nursing home on Medicaid! Tell you mom that she and dad bought that insurance for a reason and NOW is the time to use it. They wisely planned so that they could live very comfortably when they became frailer and now, for no good reason, she's choosing to limp along (dangerously!) in their current situation.
They have the luxury of choosing a better life, help them do it. Help your mom imagine them living in a supportive community – help available at the push of a button, the company of other women who are in the same boat; caring for their spouses. If your mom is still pretty spry, they'd probably be able to live in an independent apartment with some care for your dad. Depending upon their policy (and there are lots of different options, so read it carefully), their rent would be covered. Look for an independent living community that's not a CCRC (CCRCs require that both of them be pretty healthy to be accepted). FInd a rental community where they can add care as they need it and where they are used to helping couples stay together when they have differing health prognoses. Make sure the IL has a personal care or assisted living wing in case they should ever need it.
Good luck!
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Maybe hope is just what your mom needs to get her through the days while she is caring for your dad. I'm sure she is exhausted. Dementia wears people down very quickly, not just the person who has it but everyone around that person. Those meds your dad is on do slow the progression of the dementia but don't cure it or reverse it. Your mom is probably hanging onto anything she can just so she can function and the success of the meds is something for her to hang onto. There may be a little bit of denial in there too.

Two people in their 90's, the husband has dementia and the wife is caring for him and they live alone. Like you were wondering, in my opinion this is not a sustainable situation. Having a back-up plan might not be a bad idea. It would be easier to figure out a back-up plan now then in the middle of some health crisis. Mom is in her 90's and is caring for dad, also in his 90's, who has dementia. People half her age are on this website talking about how extremely difficult caring for an elderly person with dementia is. What happens to dad if mom gets sick?

Ruth, I know how difficult this is for you and good for you for being so hands on from a distance and getting there in person when you can. If your mom is in denial she may not be telling you everything, in fact I would be surprised if she were. When you go to visit it might be a good time to begin a dialogue about Plan B.
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I would let well enough be, he is being taken care of and if mom thinks he is doing well that is great and for now what matters. I would make sure that Power of Attorney and all their legals are in order to help with future issues and eliminate hardships and headaches now. One day at a time, a good day is a good day, we can't live dreading the what ifs, deal with what is.
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Dear RuthAO,
Anything is possible. And it's a good thing you are going to visit soon. Your moms definition of getting better maybe different than yours. You say your mom says that dad is not repeating, that could mean different things. Your doing the right thing by visiting and observing your dad and mom and see what's going on. If you are the poa you can ask the dr of what he thinks .
Trust your moms opinion, she's with him daily. Have a nice visit with your mom and dad. Take care
Equinox
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All sounds very familiar to me. My aunt and uncle are in the same exact situation right.Both in their 90's, uncle breaking down or same drugs as ur Dad. I've already been through this with my own parents. It's hard to know what to do or what you CAN do. Your question, "Or is she just building a case for them to continue living at home? " My answer is probably both. When my Dad went on Aricept, his mental condition DID get better. He was less forgetful and his thinking was clearer. The drugs work differently for different people. Aricept is know to "slow" the symptoms of Alzheimer's not cure it, so that is what you may be seeing. Your mother's activities, maybe they are keeping her busy so she doesn't have to face the facts of what is happening to your Dad. If they refuse to leave the house, they refuse. If another sibling can convince them otherwise, ask that one to step up. I think you are doing what you can do, stay close and visit when you can. Unfortunately, one of them may fall and then things will change. Sorry to be so straight forward but lived through this already. Hang in there!

-SS
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