This in between place is so hard to manage. Any advice?

My husband's sister had depression and neurological problems, and had deteriorating short-term memory for some years. She could not find her way around someplace she hadn't known for years; her sister tried to move her out of her home at one time and she would have not adjusted to anywhere else, and once when her daughter tried to have her at her place she kept getting out of the house and trying to get back home. I was involved with her care for some time, and once when we did try to move her when she could still drive to some extent she would drive by her previous home and harass the current tenants. She was in her 50's when this all started. It was pretty obvious that she would not adjust to a move, and finally her daughter arranged a caretaker to come see to her meals and cleanliness. One evening the caretaker left her with dinner on the table, and she was found the next morning on the floor passed away, with what finally was found to be food lodged in her throat. As sad as that was, we don't think she would have survived a move. Sometimes there is no good, merciful answer.

I am also at this crossroads with my dad. He is 85 and was diagnosed with "dementia/Alzheimers" almost three years ago. At that time, my mother, his wife of 63 years was dying of cancer. They had both given me POA - both financially and medically - two years before, so I already had this in place and knew what was expected of me. I have two siblings but they each live in other states so cannot offer me much physical support. My brother live closest and does come home frequently, but then, my dad seems to be more confused when he leaves. Right now, my dad still lives by himself - I live 3 houses away! -and drives his own car to coffee in our small town. There are many times when I so worried about him but then, I just think "please hit a tree so I can take the car away without guilt!" The real problem with him is that he is so physically healthy! He has a patch for the dementia and takes blood pressure medication, but that's it! I clean his house weekly, set up his medications (vitamins!), do his laundry, and handle his money - which is exactly what my mother and grandmother did for him! Unfortunately, this means that when I try to talk to him about what he would like to do when he can no longer live alone, he looks at me like I am the one who is demented! I try to find things for him to do at home - puzzles, crosswords, news programs on tv - that might stimulate his mind - at least for a little while. I try to make him laugh with me about how awful he is at even making a bowl of cereal! I ask him to help me do some of the housekeeping chores when I am there - like throwing away the newspapers or vacuuming the carpet while I do something else. Sometimes he does what I ask and sometimes he doesn't! But we usually get to laugh together and that is so important. Try to concentrate on being as positive as possible with your mom and try to laugh. If a UTI is what is causing some of her problems, be sure to complete all of the medicine as elders seem to run the risk of not completely getting over UTI's and then the cycle begins again. I have also found that a local support group for the caregivers of Dementia/Alzheimers people to be very helpful - it's a great place to vent!!! And they can answer questions for me - or at least know where to get me the information. Having as much support as possible is crucial to your well-being. If your son can help, use him. If your mom has a close friend and she/he is in agreement that your mom is no longer safe at home, use them. What about her pastor/priest? Maybe they could be with you when you approach your mom with the possibility of a move. All of this is very frustrating and completely not what any of us ever thought we'd ever be doing, but here we are......in a role reversal or being a parent to our parent or whatever you want to call it and we have to make the best of it - for everyone's sake. Good luck to you and your mom -and try to laugh a little each day!

Moving someone with short-term memory problems is a very difficult thing. My husband's sister had neurosurgery for a brain tumor 20 years ago, and also a severe depression. She got so she couldn't work because she couldn't remember what she was told, and when she was still driving, couldn't find her way to someplace unfamiliar and got to where she could barely find her way home from the market.. She would call me for phone numbers of her sister or brother (which she had somewhere herself), and sometimes for the date--would ask me to send her a calendar. She was a very difficult person to live with; had lived with us at one point years ago but refused later. A few years ago she fell in her back porch early Christmas morning and a neighbor heard her call for help and called her daughter. The daughter took her to her own house when she came out of the hospital, but she kept wandering the neighborhood trying to get to her own house, 80 miles away. Of course, the family often talked about assisted living, but she would not have adjusted and would have tried to go home all the time. Finally her daughter arranged for a home aid who came in several days a week. About a year ago her daughter went to check on her on a Sunday morning and found her lying on the floor, gone, and her previous night's supper on the table. Her son insisted they look into the cause of death, and found that she had choked on food. She had gone to Thanksgiving dinner at her brother's house a few days earlier, and my niece told me that she was having difficulties getting around and speaking. She was 66; and the family can't help thinking that as sad as it was, there really weren't any good alternatives for her.

Day stay is great. She may hate it to begin with. It took my husband about 10 weeks, twice a week. I stuck to my guns and he happily goes now. Great interim solution. It will also give you options for her care if you plan a vacation or need extended time off. Good luck with your search

Thank you for the advice and thoughts. I do have POA, which she was reluctant to do but thankfully did! I am holding firm about not moving in with her. I am going to look into what day centers are around and see if i can convince her to go socialize a day or 2 a week. If she wont, then thats her choice.

This is very similar to my Dad's situation. I did have him at my house but that was not working out because he was leaving on his own when we were at work. He's now in the Memory Care Unit of an ALF. He's always angry, always complaining, and I've had to limit my visits to very brief ones because of the stress it was putting on me (my only sister lives far away and is not involved, my Mom passed away). I simply had to take over for him when my Mom died and make his decisions even though he fought me tooth and nail. At least now he's safe and gets his proper medication and is close to my house so I can see him every week. Good luck to you.

Since she still has long term memory and knows you, get her to sign POA for you, and then you will be able to do what is in HER best interests. Sure she wants what she wants, but she really is not capable of making logical, intelligent decisions. She has dementia. She is only going to get worse, so you had better get all her/your ducks in a row FIRST so you can prepare for the inevitable. You be the parent now.

Sheryl: Your Mom may never be happily compliant about changing her living arrangements. Hopefully you have Power of Attorney and all your legal arrangements are made. If not, please see an Elder Attorney. Be careful about leaving your own home, your Mom will be in constant change. What she needs today is not what she will need tomorrow. Make a plan for that hard decision, know exactly what you plan to do and when that day comes when she needs more then you can give, all the decisions have been made now it just the doing. She will be unhappy but seems she is unhappy now. Unhappy and safe is always a better choice.

Utilize services in her area to assist with her care. Contact the Area Agency on Aging or Bureau of Senior Services for information on in home services and caregiving services. Look for a local adult medical day care-it can be a great place for her to socialize. Please tell her physician all the symptoms you are seeing, he/she may be able to make other suggestions. Ask about home delivered meals, that may be a way to increase her intake. Shop for easy fix foods or cook the meals and package them up into single serve portions so it's easy for her.

I went through this situation with my Mom. As her memory got worse, she became increasingly afraid. One thing I did was have her write notes about her decisions. She forgot she took the notes but I'd remind her to get her notes and read them. She got in the habit of doing that for awhile. But if I had waited, that wouldn't have worked as she no longer can manage to take legible notes.

However, she finally moved only because she was so sick and confused that she realized she was going to die. She was just scared. I came to town from another state and took her to the doctor and he point-blank said to her face, "Go live with your daughter - you can't live alone any longer." And, coming from him, she did go along with it. I moved her FAST before she could totally forget, reminded her EVERY DAY.

I dropped everything I was doing to make it happen fast so I could get as much cooperation as possible. However, while I try to be considerate of her feelings, I don't worry about making her angry - I worry about keeping her safe. If she's angry it does make it harder to get her to go along with things, but I notice she has mood swings and try not to worry about them.

She does live with me. I do workj full-time. My husband helps a little but I know the day will come when I'll need more help. I don't know if I will get a visiting nurse or will have to find some other option, but it will depend on her medical condition.

Having someone with MCI (mild cognitive impairment) who doesn't remember much of the daily activities and decisions is quite a lot of work. However, I'm glad to help her and am managing it.

My mother does not have a lot of money and that is one reason I asked her to live with me. For another, I like having this extra time together and it's been priceless. However, if I need to find a place for her, I will be able to help her apply for Medicaid, so that's another option to consider.

By the way, I did not have an option of moving to my mother's house. My husband's job is not close and it would be hard for him to find another. AND, I'm not planning to leave him. So, easy to say "no" to moving in with my Mom. Plus, even if it were possible, I would never go live in another person's house. My parents moved-in with my grandmother - the bought the house from her - but she always felt it was her house and was troubled by the changes they made to it. It was a bad idea and grandma lived a long time - it was many years of hard feelings a battles over how the house would be handled.

I just had to put something out there for this group: we all think its so easy a decision to leave a home that someone may have lived in 30 or 40 years. For one moment put yourself in their place. Imagine someone coming in and saying to YOU that you have to pack up the place you love and leave because its no longer convenient you stay there or not safe or you put in the reason. While intellectually we know its for their best interest, it is still hard for them.

I have an aunt who is 92. She has all her facilities and moved into her daughter's home after her husband of 65 odd years died last year. It was a big house and the neighborhood had "changed" so for safety they moved her. She told me in tears how much she misses her things, how much she misses her house and that while her daughter is good to her and its a beautiful home, its not her home. She no longer makes decisions whether to change curtains, to paint, to plant a garden etc. Its her daughter's house. I so get that. When I moved into my parents house last year I immediately felt the loss of independence, of being able to decorate more than 1 room, of feeling that this was not MY house but I'm now in someone else's.

All I'm saying is lets all try to be more empathetic. Yes, it is in their best interest to move most of the time, but the move symbolizes a lot more lost than just health. let's be mindful of that.

Won't leave the house?! If my mom had her choice she would be a hermit. Once a very social person, this disease has completely changed her personality. Once so outgoing, so many friends that now she wouldn't remember the ones that are alive. Had a man stop in the other night to drop off a quarterly prayer book. Mom met this man with a big hug, and I know she must have thought he was someone else. Who the heck know who?

Even though each day I struggle to get Mom out of the house to her day program it is a effort with reward. A few hours for me, and Mom enjoys herself once she gets there.

When they call and cry, whine, complain, accuse, or repeat things, they are reaching out through the veil of diminishing perception and increasing confusion, seeking to find, in your voice, compassion, caring, love, and validation. When children are scared or tired, they act out. Elders are the same, and they have reason to be scared. My mother is troubled that she finds it hard to think clearly. Since your mind is clear, you can redirect the conversation and guide her. You can be the one to repeat! State some truths over and over, to her. Such as, "Mom, when people are 85 they often have helpers come in." Or, "At 85, many people are more comfortable living in an easier place." What she called about is rarely about the content of what she's saying, it's about seeking a loving contact. Also, this journey is not predictable, and many of us say, "if I had only known what it would be like, I would have insisted (that she line up help/that she move to assisted living/that she sign over POA, etc.)" Because it ruins your, the caregiver's, life to play "catch-up" just scrambling to accommodate the next level of disability. Seeking solutions while trying to maintain. Each change is a crisis when systems and external assistance are not in place. My mother grudgingly got used to the nurse coming twice a week, and even (secretly) enjoyed having that infusion of fresh outside energy coming in. So it IS possible for you to accustom her to the changes that need to occur. But as many people urge, here on this site: begin to take action NOW, as soon as the first signs are apparent.

SherlyBeth, be prepared for your mother to attempt talking to you as if you were still a little girl for the purpose of guilting you or obligating or to take her to live with you or fearful ____ will happen if you don't taken her to live with you.

I don't mean any disrespect toward your mother, but that is how some elderly parent's will treat their adult children when faced with the adult child telling them no about something or otherwise resisting a change that is really needed for their care and safety.

She might aim for the inner child, but you stand your ground as an adult and keep responding as one adult to another as you discuss things with her. That does not mean being necessarily aggressive, but it does mean being assertive.

You can do this. It is a role reversal move, but one we all have to do at some point.

Out of fear and feeling no longer in control of their lives like they once did, I think our elderly parents try to reverse roles on we adult children by trying to wear the "parent hat" once again and relate to us as if we, as adults, are somehow still their little children.

That's when we have to understand their fears and anger over the changes going on in their lives, but also realize that due to their dementia and other health limitations some decisions just have to be made for their and other's well being.

Sadly, their minds are declining which keeping them either from understanding what you are trying to explain to them or remembering what you already explained to them.

When our parents were of sound mind, they knew this day would come and so they entrust us to take the best care of them financially through giving us a durable POA over them and medically by giving us medical POA over them.

They may well not remember now the reason that they entrusted us with such responsibility and authority, but they did for the very time and situation such as this.For some this is a big pill to swallow, but you sort of have to absorb to deep inside that your parent has entrusted you and authorized you with and for this responsibility. So if it helps to think of it this way then try to focus on the fact of being authorized and trusted with this authority to carry forth your responsibilities as the POA outlines, then that may well build up your confidence to move forward more than focusing on 'oh my, this is going to make mom very upset and thus I'm so afraid.."

I'm not sure that I like the phrase parenting our parents. It is a role reversal, but it is not really like acting as if we are our parent's parent as if they are a child once again. I think of it more in terms of we are acting in their behalf as if we were them with a sound mind about things. Below is a link to several articles on this site about role reversal.

https://www.agingcare.com/search.aspx?searchterm=role+reversal .

I hope my attempt to build up your sense of confidence has helped as you prepare to be more assertive.

Don't feel bad that I perceive that you may need a pep talk as you move forward for you are not the first one that I've given this pep talk to when I feel that someone is feeling a little apprehensive about being so assertive. You are the authorized person to be so assertive within the boundaries of what the document says your responsibilities and abilities are as the durable and medical POA.

I wish you the best as you deal with all of this. Be your mom's adult daughter for that is what she really needs right now although she might not see it that way.

Get your barbed wire ready, Sheryl!!! Don't invite her over the threshold!

You're right, it is time to start bringing her gently round. Don't even put the option of her living with you on the table if it's a no-no; but do start gathering an enticing array of other agreeable choices. The more positive the decision to move, the better your chances. Best of luck, keep posting.

Thanks all...i agree that i need to start a more aggressive discussion with her now before things get worse. Her assumption is we will live together and shes def not going to understand why i wudnt do that since im not married and live alone....which is a common problem im sure. My son does work full time but is able to help with car/house issues or things that im too old to do! At this point, she wont agree to move anywhere...she might act somewhat receptive to the reasons that its a good idea, but actually moving right now, no way she will. I think ill just start bringing it up more and more often so that its something she has to start accepting is coming.

Sheryl, I really sympathise. My mother lived alone for nearly ten years after my father died, and looking after her crept up on me from that day. Not that I minded, and I'm sure you don't either; but as you get increasingly worried and she gets increasingly unreliable, you're right - it's that limbo while you're waiting for something to go wrong enough to force a move, and it is very stressful, I agree.

The thing is, though, I don't think you should wait in terms of planning for her future. I respect that she wants to stay in her own home for the time being, but even if she won't face it you know that that won't be possible forever - unless, God forbid, something really dreadful happens.

AmyGrace also makes the very good point that the better her health when she moves, the better her chances are of adjusting to the change - and she may not have much time left of comparative good health.

It's getting her agreement to it that's the rub, I appreciate. Are there any potential conspirators you can think of who might help you persuade her? What about your son? - is he fond of his grandma? What about her doctor? - there's nothing to stop you calling him with information, even if he can't discuss your mother's confidential business with you. What about social services, or neighbours? You may find that you're not the only one who's becoming concerned, and that you have more back up on this than you realised.

On your other thread, "Making decisions that are going to make your parent mad",
https://www.agingcare.com/discussions/Making-decisions-that-are-going-to-make-your-parent-mad-175895.htm?cpage=0&cm=434452#434452

I see one response encourages you to take your mother to visit some assisted living places assuring her that this is not for right now, but when the time comes when she needs it. This sounds like a way of putting together a plan in preparation for the crisis whenever it takes place.

I definitely agree with the idea that you should not move in with her nor do I think that she needs to move in with you. Moving in together seldom works out well for both.

If you were to move your mother closer to you, how much help could your son really give you? Does he work a full time job and have a family? He might be rather limited in how much time he really does have to give depending on his various other responsibilities and you may need a whole lot more help than that as her health declines. I'm just asking.

One more thing. Find an independent living facility where she can transition to assisted living and mental care when the time comes. It will be much less traumatic if the move doesn't mean completely different surroundings and strangers. I feel so badly for my mother, but there is nothing we can do for her.

Sherylbeth you just described my mother, except she is farther down the road at 100 - yes 100. My sister did just about everything for her, maintaining her house, yard, etc until finally, 8 years ago we forced her to move to a nice independent living facility. She never would have gone if we hadn't given her no choice, sold her car etc. She complained about everything and never socialized. One minute she said she was lonely, the next she says she doesn't want to be around people. She still complains, she likes complaining. We couldn't win. Now at 100, she is almost deaf, has a hard time walking far, and her short term memory is about 2 minutes long. She still refuses to accept she needs help. We do her shopping (she can barely work the stove) cleaning, laundry, doctor appts, bills, etc. After 8 years, I'm worn out. Now she has been diagnosed with Alzheimers and the facility says we must move her. She doesn't know yet and when we do it, it will probably kill her. We waited too long and now she has absolutely no coping skills to adjust to the move. Even an upcoming holiday throws her for a loop and she obsesses on it for days, confused, calling people etc. She can barely hear, and her conversation consists of talking about 5 different things about family, over and over and over and over. She takes no interest in anything but insists she can take care of herself. We should have moved her years ago, but family fought me on it. Up until 2 months ago the doctor refused to support me on her decline and need to move her, saying she wasn't ready yet. Then she throws us for a loop at the next exam and tells the facility she has Alzheimers. All I can say is, once your mom starts to go downhill mentally it can be very fast so if it appears she needs a lot of help and is decline, don't do what we did. I wish we had moved Mom last year when she could have adjusted.

She drives one mile away to her hairdresser once a week. Thats the only driving she does...or wants to do. She doesnt have long term care insurance. I could probably sell her home and get about 140,000 from that. I have faxed letters to her dr and thats why he started the verbal tests he does when shes in for checkups...and she def does try to act like nothing in the world is wrong with her in front of him...and she does NOT like when he asks me questions about her memory and i tell the truth. She has been independent since my father passed 30 yrs ago so its like an embarassment to her for even a dr to know that shes having issues. She is enough 'still here' that moving her now is not critical in my eyes...the repetative questions, phone calls is worsening but i feel as long as she is safe, clean, and eating...i dont want to force a move. She wont socialize as ive already tried to suggest her going once a week to a day center and that was shut down immediately. Shes bored and lonely (one day...the next she doesnt remember saying that) but doesnt want to do anything about it. I guess for me its a waiting game, and that in itself is stressful.

A person with no short term memory really should not be driving for they can get lost and not find their way home. My aunt did this and it was not long after that her husband had her placed in assisted living.

Given her increasing memory problems, I would not recommend moving her into your house for if she needs 24/7 care and you are the only person who can do that, it will quickly become far too much for you to do and there are plenty of sad stories about that on this site. Does she have enough money like my dad who also has long term care insurance to pay for some caregivers to spend time with her at her house?

"makes it much more inconvenient to run over and do her shopping or check her tire pressure..." is she still driving?

SherylBeth, my dad does not want to leave his home either although before his wife died back in May, he said that he would then go to an assisted living that he had already checked out.

He does not get up on his own in the morning and get dressed. The caregiver gets him up at the same time every day, He takes a shower and dressed himself. Then he eats breakfast. He often will take a long nap until it is time to eat lunch which if the weather is good the caretaker may take him out instead of cooking at home. Again, he usually takes a nap for a while until it is about time to eat supper which is usually at home. He eats very well.

His short term memory is basically gone. Sometimes, he thinks that I am his youngest brother who is the only sibling he has that is still alive. My dad is 89 which is older than anyone in our family has ever lived.

He now walks with a cane, but really needs a walker which he refuses. The difference between him now and even in October is a lot. He has worn depends for some time now. He's recently been diagnosed with Parkinson's.

He is having a very hard time following a conversation and upon my most recent visit I noticed how even less talkative he had become than he was even in October which is not like him.

He's been evaluated by his doctor but also at Johns Hopkins hospital which diagnosed him with ALZ which involved far more test than the simple verbal test.

Are you telling her doctor what you are seeing? The doctor really needs to know that despite the huge effort your mom puts forward for the doctor. I figured that my talking or faxing my mom's doctor my own observations was part of what it meant to be her medical POA.

Sometime to consider that I was encouraged on this site to consider is moving my dad before while he has some mind left so that he can meet people near his own age which might in fact reduce how much sleeping that he is doing because possibly he is bored.

Back before Christmas, I started a thread with the question "How do you know when it is time to place a parent in an Alzheimer's Memory Care Place" You might want to read that thread to see the input from others @

https://www.agingcare.com/questions/when-it-is-time-to-place-a-parent-175540.htm

There are other threads on this same question and variations on this same question which you can see @

https://www.agingcare.com/search.aspx?searchterm=when+do+you+know+it+is+time+to+place+in+an+Alzheimer%27s+memory+care+place

I wish you the best in your journey.

Cmagnum...her primary doctor put her on aricept but her memory was already gone by then. She manages hygiene herself...and altho she doesnt eat that well, she does eat enough. And yes she DOES make a huge effort to act okay when i have her in for checkups/labs. The dr gives her a 'verbal' test each time...she does fair because shes making a huge effort to remember stuff...which is different than day to day. She hasnt been diagnosed with anything...and im not sure what the difference is or if it really matters between ALZ and old age dementia?

Thanks freqflyer....I know mom doesnt want to leave her house because as she says, 'ive always lived over here and i wouldnt know where i am or how to get anywhere'. I remind her that she never goes anywhere..that i take her everywhere now. It doesnt matter. I do have POA but rather than force her to move while she still has some mind left and endure that wrath forever, ill leave it as it is and see what the next 6 months brings. If her safety/health becomes at risk, ill have no choice. Of course she doesnt know that her memory is gone...i tell her to write things down when she calls me about something, so i dont get another 5 calls about the same thing. Sometimes she will. Its so irritating dealing with the repetition and constant phone calls even tho i know she cant help it. I hate this in between place...but i know it wont go on forever.

How recently has she seen her doctor who I hope is a neurologist or a geriatric doctor for an evaluation of her Alzheimer's? Does the doctor now consider her competent? Are you telling the doctor your own observations privately for parents will put on a show sometimes when they go to the doctor and act like they are better than they are. My mom did that, but I always informed the neurologist ahead of the appointment what I had observed about her. At one point, he did find that she was not competent although she did sometimes have good days, but then there were the bad days also.

Does her doctor think she is ok where she is or does the doctor think it is time for an Alzheimer's Memory Care Unit at a nursing home.? My step-sister and I are wondering about this concerning my dad who right now has 24/7 caregivers at home, but things are getting worse and he has been diagnosed with Parkinson's I live over 350 miles away and my step-sister who is his durable and medical POA is only a short drive away in another town. It looks like we will have to make a decision this year.

Does she have any means by which to pay for people to be with her?

I assume you are her durable and medical POA since you are obviously in charge of everything which is great. Some parents will not or do not give their adult children POAs which makes life so much more difficult.

SherylBeth, I know exactly what you mean. I am dealing with that with my parents [mid-90's] who still think they can live on their own in their own non-elder friendly house. For every year they get older, it is like 5 years, as they are declining quickly. This is the first year my parents weren't able to rake/bag all the leaves in their yard... so Dad is in a panic.

Our parent(s) doesn't want to wave the white flag of surrendering that they need help... they want to stay independent until their last breath. There is nothing we can do or say to change their minds. It will take a medical emergency like a bad fall to shake some sense into them, as sad as that sounds.

My parents are also bored, well that comes with the choice of them staying in their home instead of enjoying a great social life and all the activities at a retirement village. Until they change their mind, I am not going to be their entertainment. Even though they live literally around the corner from me, I see them maybe 15 minutes a week, unless we are going for an appointment. All this running here and there for them doesn't give me any social time to spend with my parents... [sigh].