Mom has lived with us for three year and I think I have reached the end of my rope. I always said I would place her when it started effecting my family but it is well past that. I have talked to her about assisted living and she just pouts and tells me I am kicking her out. We had to move to Virginia from California (can you say guilt...)almost two years ago - All she wants to do is go home. the only thing is there is really no one to take care of her there. I have a brother in California but he is really no help at all. She would have to go to assisted living here so I could continue to help her but not have alzheimers in my face 24/7.

I think I really need to do this for my own mental health but I don't know how to actually move her out without her thinking I am just abandoning her. I have a husband and two young (5 & 7) boys. I am either ignoring her needs or theirs. I just can't do it any more. Any suggestions

I think that you should consider moving her and then being her advocate and part of her life. If you are at the point where you can't continue on as you have been, then it's time to make a change. I think that if your LO were in her right state of mind, she'd not want you to sacrifice your whole life for her. Certainly not to the neglect of your home and children.

1) Most of our ADLOs want to go home, even when they are still living in the homes they've been in for decades. So don't let that be part of the decision.

2)Don't ask her about moving to ALF. Just do it. She's beyond the point where she can or should be part of the decision-making process.

Instead of trying to convince her, spend your energy on finding a good ALF for her that can truly handle people with dementia...and then focus on fixing up her room with her special things.

My take: good caregiving is a balance between what the ADLO wants and what is best for them, AND what allows the primary CGs to maintain their physical, mental and emotional energies and meet the other commitments in their lives - to spouses/partners, kids, other family, jobs, etc.

Grassflower: You really hit home with your remarks. My mom also talks about going "home". Even tho she has been in the same home for 43 years! Also, it is a helpful reminder to know that they can not make decisions for themselves it is up to us to make sure our L.O. are taken care and ourselves. It's just difficult to make the changes necessary as this disease progresses. Your insights are helpful to this forumn. Thank You!

what do I do if she refused to participate in the enrollment proccess? She has to go for an assessment. I have found an ALF that appears to hve a caring staff. I know someone else that has a loved one there and they are happy with her care.

When my mom's assessment was done, the ALF rep came to the house. I simply introduced her as a friend of mine and she sat down and chatted with Mom for a few minutes. I had already told the ALF rep about incontinence issues, etc.

Mom never knew what was done, but when we moved her, she was delighted to see that my friend worked there. (Actually she *did* become my friend through this process. She no longer works there, and Mom no longer lives there, but we are still friends.)

Assuming you have her POA, and she is no longer competent to "participate in developing her own care plan" (legal terminology), you make the decision. Once you have done that, we can all help you on strategies of the actual move, but let's take one step at a time.

You will have guilt. I think it is part of being a caregiver. However, if you were to look at the situation as an outsider, what would you think of the situation. Two years after placement I am still getting over it, but mom felt at home within an hour. Upon arrival of the facilty I told her the doctor wanted to try some new medicine for her memory. She was aggreable to that because she thought her memory was off a little. They asked her to stay for dinner. Then they said it was dark out and ready to snow, so why not stay the night. Visit before at different times of day and get a feel for the place.

quote:

When my mom's assessment was done, the ALF rep came to the house. I simply introduced her as a friend of mine and she sat down and chatted with Mom for a few minutes. I had already told the ALF rep about incontinence issues, etc.

Well, you don't make it a Big Decision about "Mom, We're Going To Have To Move You To Assisted Living Because You Can't Take Of Yourself."

If the ALF is truly capable of handling people with dementia, they will just come to the house and visit with her. She'll never know why. You'll just intro them as a friend like Carolina Songbird said.

I know, it seems like she'll "catch you" and say "What are you doing to me?"....but honestly, by the time we place them, our ADLOs usually just aren't capable of thinking at that level anymore

And when it's time to move her, you don't tell her that's what you're doing. You make the arrangements behind the scenes, set the time/date with the ALF, drop by with to "visit a friend". Then they will greet her enthusiastically, whisk her off for a fun snack and activity while you tell her "you've got to run to the car for a minute."

Then they'll get her settled without you. You'll visit in a day or two and voila - she'll be moved.

I don't want to suggest it will all be sweetness and light, but this part of the transition is not nearly as hard in practical terms as most of us fear. Emotionally wrenching for us, yes - but not that hard logistically.

I so understand the "sucking the life out of me". Seriously, when you get to that point, you need to do something about it. Your health and your family should not be suffering.

Placing our loved ones is never easy. I agree with the above posters that it is something we do for them, not to them. It sounds like she needs the ALF now. I chose the ALF route for my mother because I wanted her to have quality of life. Activities, friends, safety, etc... Of course it backfired for me due to the way my mother's dementia manifested itself (as the devil, I swear), but I believe if your mother can still have a little socializing and fun, ALF will so be the right place for her.

Even though this disease is still sucking the life out of me, it's different with her not being home and me having to check on her 24/7 in her home (I call wherever she is numerous times a day). I have way more peace back in my life now.

I hope I wasn't sounding selfish. I couldn't take care of my mother anymore.

Grassflower said it very well...

and truly you owe it to your little boys to be able to focus more on them...school work, soccer, baseball, boy scouts, camp outs, sleep overs,...there is no way to do that when you add your sweet mom to the mix. This is such a wonderful time in your boys lifes...you don't want to miss it.

Understand, that you will not stop caring for your mom, you will just be focusing her care in a different way, but just as important.

I have my step-children here every other weekend...it is almost impossible to balance everyones needs...

And like lammie said in her right mind, your mother would never expect you to sacrifice yourself or your family.

Do you have have DPOA over her? Does she need to agree to placement? If that is the case another forum member will probably address that...I have yet to face that problem yet.

Good luck...you're doing the best you can and that's all anyone can expect.

It is going as badly as I imagined it would. She tricked me at first. She is so passive. She went along with the interview and the nurses questions. She was rated as a care level one which is the lowest care level (meaning they would really only need to give her meds and make sure she got to meals). That is right wher I thought she would be. So now I am thinking, OK, this is not going to be so bad. Then I got a call from my aunt saying Mom had called her and was crying and asking if she could come stay with her. Then the caregiver writes me a note saying she is crying all the time and is there anything she can do to help? We are right back to square one with her wanting to go back to California. She has quite a few friends there and my brother is there also but he is the one that never calls so why would I think he would be able to manage her care. I cannot ask her friends to do that they are as old or older than her. I do think that they would visit her fairly often at least for a while.

I am thinking of putting her in respite care in California. I don't know what else to do. I am making myself sick.

I do have DPOA so I could just place her here if I wanted but she would be just miserable. She is still cognizant of her surrounding. If I am ever going to give her the chance to live in CA again, I should do it now while she still has some quality of life. I guess I will just have to rely on others to make sure she is doing OK. I am really devistated that she is chosing her friends over her daughter and grandkids. She knows her life will not be like her old life (no wheels) but she thinks it will be better than she has here.

Any advise...???

I've been in the same situation with my mother for nearly 4 years. We had to move her from her home in Alabama to be near me and my brother. When she's feeling down, things aren't going her way, or she gets sick, she wants to go back "home". They always want to return to a life and time when they were happy and comfortable. That place doesn't exist anymore.

Bottom line, you need to do what is best for her, not what she thinks is best. Her thinking is severely clouded by dementia.

Try to keep her connected to her friends out there as much as possible. Those that will write or call may help but it's always possible it would just make her more homesick.

You have my heartfelt compassion. In my opinion, she would be better off by you if there is no one there that could really advocate for her. You will have more energy and can focus on the positive and try to get her to feel better about where she is.

Please understand that at some point, they won't be "home" no matter where they are. Bear that in mind while you make your decision.

Hugs & prayers!

quote:

Bottom line, you need to do what is best for her, not what she thinks is best. Her thinking is severely clouded by dementia.

Very well said.

1) Understand that she ALREADY has significant brain damage even though she's still "walking and talking".

Her judgement is severely compromised - that's why she thinks she could manage with her friends in CA. This, and her fixation on returning to somewhere she used to live, aren't the thoughts of a normal, healthy brain. They are SYMPTOMS of her disease. Very common if you read messages from other posters.

It would be a serious error to act on them as rational thoughts from someone who actually understands cause-and-effect, pros and cons, etc. the way a normal adult does.

It's like my mom who wants to leave her group home and promises she will "sleep on the couch and do all the cooking."

Think of it this way - if your toddler doesn't want to go to day care, he still has to go. He doesn't get a vote.

2) Here's some information that will help you understand why she thinks everything is fine when it clearly isn't:

http://alzonline.phhp.ufl.edu/...ding/Anosognosia.pdf

3) It's also entirely possible that small doses of an antidepressant would help with the intense emotional swings. Those are also characteristic of dementia. "Normal" people don't act that way, remember?

4) Is senior day care available in your area?

That would provide some immediate relief for you and your family and provide a safe and secure setting for her too.

I feel so badly for all you are going through.That being said I feel compelled to tell you that I think you are kidding yourself if you think you can impose on "friends" and a brother that has shown no interest in helping with your Mother up to this point.

I don't think you will have a moment's rest if you settle your Mom on the other side of this country. It is not her friends' responsibility to see after her, and trust me, it will not be done.Unfortunately this chore has fallen to you.

You keep saying she is choosing Calif. and her friends over you and your children. Please try to understand that she is no longer ABLE to make choices such as this. She has a BRAIN disease.

She may not realize she can no longer make these decisions but you should surely know it.

Please quit giving so much power to her "yearning for home". My poor Father yearned to "go home" EVERY DAY UnTIL he died, and he was living in the home he built for my Mother and himself 37 YEARS AGO!!!!!!

YOU need to figure out what is best for her AND your family, and then put that plan into action. I do not mean to sound harsh but I think you are taking a detour here that is definitely going to put you on the wrong road.

I wish you the best of luck.Sandy

Do not move Mom back to California - you will end up doing what I am doing, traveling back and forth every 30 to 60 days and for every emergency.

After my Mom's last hospital stay, I moved her to NH for 'rehab' and closed her ALF apartment since she could no longer live there. When I told her that she had to say at the NH she told me she could not stay at the 'He!! hole' and that she would live out on the streets before she would live there. Her description of living on the streets was comical and I have to say I had to swallow my laughter.

Nevermind she could not get out the door, I got an earful of how if I had not sold her house that she could still live there and have caregivers. Nevermind she would not even call a plumber to fix the broken plumbing. It was painful, but it spoke volumes to her inabilty to understand reality.

She said many hurtful things, but she was in the right and safe place.

Your Mom needs the same, she may not be happy - Seroquel did a lot to help my Mom's attitude. But at some point safety is our main goal.

good luck and hold firm.

A young girl I know said to me last week: "Why is it that one mother can take care of 8 children, but 8 children can't take care of one mother?"
I feel sad when I read the messages. I know it is hard and sometimes seems impossible, but each day will pass and end and rest will come (sometimes). I had to move my mom 4000 miles - from Wisconsin to Alaska after my siblings put her in a nursing home and didn't even o back to visit her. She had been living at home until that time and getting around quite well By the time I got to the nursing home a month after she went in, she had stopped walking, eating, talking and having any interest in anything. She has lived with me and my husband for the past year and a half and after a really difficult first year we have all settled in to a routine. And while I know she carries a deep sadness somewhere inside her that I can do nothing about, I at least can give some comfort to her days and know that she will die with dignity with someone who loves her and I will have been the fortunate one. She recently celebrated her 95th birthday and has an all terrain wheelchair so we can go for walks on the beach or through the woods or on the snow. We all have to make our own decisions in this life and I know from long experience that the easy way is usually not the best way.
Bless you for caring for your mom, however you do it.

Hello There Again: Well, when I last saw your mother, she was extremely high functioning. Is she still pretty much the same? If not, how has she changed?

I also recall that she was living in your home in Long Beach but even then pushed and persisted in trying to get back to her life where her friends were out in another county. She did this constantly and with gusto, but it would have been inappropriate to do so.

Of course this would not have worked then, and truly, it would NOT work to send her back to Calfornia now.

Her friends will not become her primary caregivers and care coordinators; they too are older and even if they initially visited, this would not last. You would have a much harder time of it trying to manage care from across the country. That does not make sense.

Your brother did not have any involvement when you did live in California. From what you have had to say about that in the past, I don't think that would change. He has no investment in this.

The only two solutions I can think of, is to find a lovely person as you did out here (can't remember her name) who befriended her and took her out and went to special places, etc. while she continues to live in your home; OR to place her in an assisted living that had sufficient social activities to keep her going during the daytime.

Sometimes we must do what we must do even if our loved one is resisting.

What sort of MDs does she routinely see? Hopefully a primary MD as well as Neuro or maybe psych. It would be a good thing to get letters from two MDs stating that she is no longer competent to format her own plan of care and is no longer able to conduct her personal business (if that is indeed true.) This will be helpful with placement as your DPOA will then kick in. (Do you have DPOA?)

Try to remember how much your mother railed against being in Long Beach when she was here. It is no different there. Frankly, I think that if she did go to live with family, or even if she did get back to where her old friends are, she STILL would be discontent and there would be the same dynamics at work in one form or another. It's her disease. I feel so very sorry for her.

Unfortuntely, this is a case of no easy answers. So, the best approach may be to get those two letters and with the DPOA, make arrangements at a very good ALF that can accommodate her needs.

If the ALF is for non-dementia residents, be prepared to make another move at a later date as the open ALFs do not go the distance with dementia. If your mother is still as together and bright as she was the last time I saw her, a dementia only ALF may be too severe for her at this point in time.

Let us know how everything is going, I hope that she will settle in once everything is together.

Johanna C.

The title of your post makes me think of something that happened a few years ago. The teenage son of a friend of mine was killed in a random shooting on a school campus. At that time, in the depths of grief, my friend said that he would not let the murder destroy him and the rest of his family.

At some point we have to make this same decision with regard to Alzheimer's disease. We cannot let our loved one's disease destroy us and the rest of our family.

Figuring out how to do this is a terrible task, and everyone who lives with it will come to different ways of dealing with it. But when you come to feel that you are being destroyed by the situation, you are probably right.

When it comes to this, we need to make decisions to save ourselves and our children. Guilt no longer applies.

It was important to me to realize that I was never again going to be able to make my father happy. He was not ever going to be happy again. He could be well cared for, and even content, but never happy. At that point I started making the decisions that would save everyone else, including myself.

I don't see this as selfish. I see it as survival.

I so understand where you are coming from. My husband and I basically put our life on hold to take care of my mother, starting a little over 3 years ago. She is almost 90 and still lucid enough to tell us how she feels, but has lost enough cognition she cannot take care of herself. We are retired so were able to do it, but after spending winters with her in southern Calif. and her spending summers here, this spring I put my foot down and said we need to stay in our own home from now on. Luckily she agreed. She puts a good face on it but I know she is not really happy. I also know I could not put her in an ALF back in California and try to supervise her care from a distance. I tried to supervise her in-home care like that for almost 2 years and it was almost the death of me.

You have to take care of yourself and your marriage and your children. Sometimes there is just not a good solution where everyone will be happy and maybe this time it will be your mother who is not happy. On the other hand, if you find a good situation for her, maybe it will turn out to be a blessing in disguise.

However it works out for you, I wish you the best. I will be thinking of you and if nothing else, you can see what a wonderful group of supporters there is here -- it's a good place to vent!

Hello Johanna, I was hoping you would weigh in because you did meet my mom (even though it was two years ago, your memory is excellent!...) Mom
is a bit worse than she was when we lived in CA but for the most part she can comprehend and respond appropriately when you speak to her. It is jsut gone a minute later... She is realizing that she truly has something wrong with her which is very upsetting to her. I think Redceder is correct tthat no matter what I do, she will just never be happy again. I guess it is time to try some anti-anxiety medications. I really want to keep what little I have of her without drugging her up to much. If she is on any medication that will make her more woozy, the stairs in my home would be even more of a danger.

I know what I need to do - just don't know how to find the strength to actually do it. You guys are really very helpful. I cannot post at work but I do read a lot and get so much support from all of you.

Grassflower - I look forward to your posts - I mean this as the highest compliment when I say that you are the new Nancy (Nduke)! We really need your straightforward approach - sometimes it is just what you want to hear.

Johanna - you are just not ever allowed to leave us!! Your knowledge and compassion just cannot be replaced!

Thank you all for being here

Ruth

Hi,
I just wanted to let you know that I was also very concerned about putting my Grandmother on an anti psychotic drug. She was very angry all the time and wanting to go home. She wasn't wanting to back in time, she knew exactly what home she wanted to go to. I brought her to live with me 8 months ago. She is 98 and takes a low dose seroquel. She was very sleepy and droopy for the first two or three days but them became normal without all the anger. She still asks to go home and is not happy all the time but she is manageable. Please don't think the drugs make every thing great, they don't, but they do make it better and they don't make our LO's all spacey and drugged.
My heart goes out to you trying to care for your mom and small children at the same time.
May God Bless You,

Thanks Frog - my mom is not angry - she is sad. Utterly and completely through with this life she has been dealt. She has had so much grief in the last 15 years. My dad left her after 37 years, my brother was debilitated by MS and now this. Her sadness is what is sucking the life out of me - I have to step away from it and I cannot as long as she is under my roof. My mom is managable without the anti anxiety (I don't know if they are the same as anti-psychotics) but maybe she will be more comfortable in her own skin .

This is another reason that I want to get her into assisted living - so I can have the hands on advise of someone that sees my mom every day. The ALF I have been looking at has a geri-psychologist that works with the residents there. I am not the best at getting my thoughts out to the Doctors so I am hoping the ALF staff can help fill in the blanks for me. That may be too much to ask but the staff that I have met so far seem very kind and compassionate and the residents seem happy in an "ALF' kind of way...

Hi Ruth. I just popped in to see if anything was going on and was shocked to see you.

As you said, you already know what you need to do. Just put one foot in front of the other sweetie.

Lori - It is great to hear from you also. Of course, you are right. But if you remember - I am the one that always wants someone else to tell me this is what I should be doing. All the support in the world will not take the burden of the final decision away from me....

Funny, I have seen your name from time to time as I read the posts at work. It always gives me comfort to know you are out there checking in with us every now and then. I guess I am looking for reassurance that there is life after alzheimers...

Any news for us? - tell us on a new post -this one is too depressing...

I too am struggling with these same feelings. I love my mother dearly and want her to be happy and comfortable, but my husband and I are suffering from caregiver burnout. My husband was hospitalized twice this month, once for a heart attack and the second time to take care of another blockage. It makes you take stock of your life in a hurry. We have been the sole caregivers for my parents since 2004. My Dad struggled bravely for 4 years with COPD, bladder cancer, heart attacks and finally smal cell lung cancer. We were able to care for him here at home until his last breath and I was so thankful for that. I don't see that happening with Mom, but I cannot bring myself to make that decision. I don't want Mom to feel unwanted. I can't imagine how that would feel and yet in reality I understand what everyone here is saying - they can't make their own decisions anymore. I have tried having someone come in and sit with Mom for a few hours and suffered her wrath when we returned. Recently I tried an afternoon at the adult life center with similar results. I can't bring myself to make the final decision but I want to spend time with my husband and children and grandchildren again.

Ruth, I wish I had known what was going on with you sooner. I just left Virginia three weeks ago.
You can do this sweetie. You are stronger than you think. I know this disease will drive you to your knees and sometimes that's what it takes for us to make changes.

Do what you have to do. To make your life right. Don't let anybody suck the life out of you. --Jim

Dear Ruth: Having known you and your mother personally, I can see how difficult this has become and how difficult making the placement decision is. I feel so badly about this.

Ruth, there is no easy way to go about this; it simply is something that is necessary for the well-being of your mother, your family and yourself. You have already reached that conclusion, it is just hard to finalize it all.

I remember so well, the day that I had to make such a decison in regard to my mother and then the day the placement took place. Not the easiest thing to do.

Unfortunately, no one can do this for us; we must forge ahead on our own. We put our toe in the water and the rest follows. As time passes, it does work out.

If it has been decided by the doctor that she is not competent to format her own plan of care and you have a DPOA, you can place her over her objections.

Object they will. And as much discontent your mother had in California and as much as she now has and will have there; I think she would suffer discontent no matter where she was, no matter what the circumstances. I think she feels a strong wish that circumstances could return to what they were before all heck broke loose with her husband leaving her in more ways than one and with her losing the ability to be who she was; healthy, whole, free and independent.

How we would love to see that wish granted, but it is never going to happen.

Yes, there may be some upset. But that too passes. I personally would not spend a lot of time explaining or telling; if there are events she can attend with you prior to her admission, or if you can go there for lunch with her, perhaps that will help as she will become a bit familiar with the facility.

When she is admitted, request a full court press of PR, nurturing and guidance the first week. That went a long way with my mother. They also asked us to not visit for the first two weeks as my mother was okay when I wasn't there, but as soon as we arrived, she'd have a meltdown.

Staying away was horribly difficult. I usually called once or twice a day to see how she was, and she actually was doing quite well with activities and all.

I send you a soft hug, this is so very difficult, but you are smart and caring and are up to the challenge! (Really.)

Hugs,

Johanna

To Mom of 2 + Mom, Speaking as a patient with a cognitive impairment may I add my 2 cents? It occurs to me that if the situation is hard for you, can you imagine how chaotic your Mom's life must feel to her? The normal busy household with children is too hectic for a senior with dementia. I think the kindest gift you can give your Mom is to place her in a home where she can be well cared for in a safe, clean, quiet and orderly environment, with the emphasis on orderly. That's what I would want for myself.

Iris L.

quote:

Originally posted by mom of 2 + mom:
It is going as badly as I imagined it would. She tricked me at first. She is so passive. She went along with the interview and the nurses questions. She was rated as a care level one which is the lowest care level (meaning they would really only need to give her meds and make sure she got to meals). That is right wher I thought she would be. So now I am thinking, OK, this is not going to be so bad. Then I got a call from my aunt saying Mom had called her and was crying and asking if she could come stay with her. Then the caregiver writes me a note saying she is crying all the time and is there anything she can do to help? We are right back to square one with her wanting to go back to California. She has quite a few friends there and my brother is there also but he is the one that never calls so why would I think he would be able to manage her care. I cannot ask her friends to do that they are as old or older than her. I do think that they would visit her fairly often at least for a while.

I am thinking of putting her in respite care in California. I don't know what else to do. I am making myself sick.

I do have DPOA so I could just place her here if I wanted but she would be just miserable. She is still cognizant of her surrounding. If I am ever going to give her the chance to live in CA again, I should do it now while she still has some quality of life. I guess I will just have to rely on others to make sure she is doing OK. I am really devistated that she is chosing her friends over her daughter and grandkids. She knows her life will not be like her old life (no wheels) but she thinks it will be better than she has here.

Any advise...???

Sorry I just tried to reply and it somehow copied your message as mine. I really just wanted to offer you some support as my mother is exactly where your mom is. She is aware enough to say no but not aware enough to really be making decisions. My mother fights my sister and I constantly, not wanting to be with the "companions" that we hire and she is sucking the life out of us also. We are currently looking into facilities and I know that she will give us a terrible time about going. I would have to say though that moving her back to CA would be very hard on you because of the distance and you sound like you are the one providing everything.It is so hard to see our parents like this but I always tell myself that it is the disease and that they really can't call the shots anymore that now we are the parents and we have to make the tough decisions.My experience has been that friends will only stick around for so long and that it will be back to you very quickly. I have kids also although older than yours(high school/elementary) but it frustrates them also. Hang in there, you are in my thoughts

Just a thought -- when first discussing moving w/ MIL, we mentioned "name of a town" and she freaked - she was not going to live in "name of a town" she was going to live in "current town". Ok. Next time we mentioned anything we just said that the "hotel" where she'd be staying was in "current town". She is really not responsive or communicative now, but until a couple of months ago, if you asked her, she'd tell you that she lived in "current town".

Could you just tell your mom that the assisted living IS in California?

Nina - that is a good idea for someone that is further along in this disease but mom is to "with it" to buy that line. She would also be confused as to why her friends were not visiting if it was CA. Not to mention, the occasional snow flurries we have here, not to many of them in So. CA.

We have talked of it several times today and I think she is coming to term with it. I am just praying that she will make a smooth (or not tragic) transition and will actually come to enjoy it.

quote:

I think the kindest gift you can give your Mom is to place her in a home where she can be well cared for in a safe, clean, quiet and orderly environment, with the emphasis on orderly. That's what I would want for myself.

Iris, my mom's experience certainly is a vote for your perspective. I initially thought I was doing right by providing 24/7 in-home care for her. But I quickly saw that her home now was a source of fear and confusion - she didn't understand what stuff was for, couldn't use it, etc. Made me so sad to grasp that it was no longer her "safe haven."

Her initial dementia-care ALF was a chaotic and disorganized setting and it clearly made her unhappy and unsettled and agitated.

Her current Alz group home is calm, structured, quiet and orderly. She is content and will quickly tell you that her life is good.