Without prior warning we are told via a…
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Mom has been in Assisted Living for 3 and half years in New York State. She was admited with a diagnosis of Alzheimer's at 84 y.o(now 88 y.o.) and we were assured that they could address her needs as her Alzheimier's progressed and when unable she would be placed in their Nursing Home. They have 3 tiers of care and my Mom is on the second tier of care at this time. There has been no prior discusion with any of us kids that there were any concerns and suddenly we are told(via the phone call...no meeting no nothing) that they can no longer meet our Mom's needs. They only told us she is not happy, unsettled and lost.....yes she has Alzheimier's. She was mild Alzhheimers when admited and is now moderate. In the last few months she has been crying more(her memory MD increased her Zoloft as of yesterday....they gave us names of Alzheimier's Unit's our Mom might be qualified for too), been more confused the last few months, some days she knows her children(there are a number of us), some days she doesn't. She now basically doesn't know her Grandchildren and is now forgetting her youngest children.....it is gut renching. My Mom fortunately has stayed sweet, she has become very child-like, she is not a behavioral problem except for the crying and wanting us children( she can't remember that we just visited or that she has had visitors or spoke on the phone )...Her short term memory is now severely affected. All of us kids are in shock because my Mom's care has spent down a good portion of her money. We were told when it was all gone they would adjust the payment and accept her Social Security and the money she gets because our Dad had Veterans Disability coming in due to being shot in WW2....Iwo Jima. He set it up so he took less long ago so there would be money coming in for my Mom should he pass first which he did....thank-you Dad for looking so far ahead. We initially took care of Mom at home but it got where we couldn't. We thought we had everything set. It has been recommended as of yesterday we look at Alzheimier's Memory Units but we've also been told we might not have enough money left for her to qualify. We have been told she does not qualify for Nursing home and we agree. At this time she can still ambulate in her small apartment indepently and use a walker for distance(outside her apartment...to diningroom, etc). The staff gives her meds, and supervises her dressing(she has trouble getting clothes on), she is still indepent with toileting and showering(though showering probably no longer). Since this past summer she has been unable to take part in various outtings that were offered which she enjoyed and now spending more time in her apartment due to her advancing Alzheimier's. In 3 and a half years she has one documented fall, interestingly the fall was last week that sent her to the hospital( fell getting out of the shower and bumped her head).....went as precaution(also routine after fall) because she is on blood thinner for atrial fib and sent back to AL a few hours later and ok. She has been in relatively good health though recently had a UTI and an URI.....she has been quite healthy over the last 3 years. To get to the point have others dealt with this? We are only 3 days into this. We are in the process of finding out our mother's rights, making a plan to calm down and speak with cool heads to her Assisted Living...they said they are giving us more than the usual 30 days to make new arrangements...lovely huh!!!!!!! They still have not approached us other than the phone call, nothing yet about why, offer suggestions or support. We have not told our Mom until we know what is up and have a plan and will only tell her last minute...no point any sooner. She likes the staff, has a sisiter-ih-law there(they are buddies) and she tells us frequently if I have to be some place this is a good place to be and everyone is so good to me. She is sad and cries because she misses our Dad, and her old life and she knows she is loosing her mind....now I'm crying...all us siblings are crying. We thought we did the very best for our Mom. We are hoping and praying she will qualify for an Alzheimier's Memory Unit. We all were very happy with the staff and our Mom's care and numerous staff had told us our Mom is such a sweetheart. We never saw this coming. Any suggestionsor advise? .
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Give a Hug
Mar 15, 2013
I have little experience with these kinds of moves, but let me point out that you have two separate issues here. One is that you are all grieving the loss of your mom, the way she used to be. I think this happens to all of us with parents who have AD or dementia; we mourn the person we could call up and consult, go to for support and the like. The other part is that you're upset with the AL, because you thought that this would be where mom would stay forever. They gave you notice in a phone call (but they're not telling you that you need to move her immediately) because these are businesses and that's how they are run. Would it have been better if they'd called you all into a meeting and given you this info? I don't think it would. Separate out these issues and as you wisely say, with calm, go talk to the AL people and find out what they see her needs as being. They are waiting for your call to set up a meeting with them. Sorry that you are at this point in the road, as others here have pointed out, in the caregiving game, change comes quickly and often without any warning.
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Wow. My heart goes out to you in this difficult situation. I support the answer given by ba8alou. I'm grateful that the AL is giving you more time then they contractually have to give you in order for you to find other arrangements. My best wishes in your search. Some nursing home have a memory care unit.
Maybe, I don't know how it works at the AL there, but here there was a resident in the same position here and after talking with the staff, her family provided a caregiver to come and sit with her from 6 p.m. until the morning everyday, and they agreed that this would allow her to stay in the AL. Her Alzheimer's was worsening. I don't know how much this costs, but maybe it might be an option if you and your siblings can afford it. Talk to them. If nothing else, maybe they know of options of memory units that would accept her. I am so sorry, there is nothing like this for feeling totally stressed out. It is always such a shock when they say this.
Thank-you for your kind remarks. We are moving forward and working with the Medical Practice that addresses our Mom's Alzheimiers. We have an appointment with our Mom with them to address her crying, restlessness and see what they suggest medication- wise next week. They also have been wonderful giving us list of Alzheimiers Memory Care Units and we are in the process of arranging to visit them....we'll see where this takes us. We have been in visiting Mom at the AL and the staff have continued to be great....no one has said anything to us concerning their request as of yet which I think is strange....we will be approaching them in the next day or so to ask for a meeting. We are trying to move forward calmly....don't want to burn any bridges. I'm one of the out of towners....the only retired.....and heading into town to check out these Alzheimiers Memory Unit with available sisters and brothers(they are hoping to get a day off work here and there). Things can get crazy but things work out. If this was 6 months ago I would not have had the flexibility. My husband is an only child and we take care of his Mom who is 96 and lives across the street.....My husband still works full time and we finally got her to consent to some outside help. She was so upset with me didn't talk to me for 5 weeks, she has dementia too.....she really likes her aide...thank God. Well that is a whole other story. It shoke us up because Assisted Living was an option being considered and now he is not so for it....her aide is concerned about her safety in her house when she is alone but she refuses to make changes.....I just keep praying. I have yet to tell my mother-in-law I'll be away and my husband needs to be away for a couple days that overlap mine...our son will be checking on her.....
Hit the wrong button before completing my above post. We can't bring her into our house....she is to demanding. So sad both our Moms dealing with such terrible brain changes. Trying to stay calm in the storm. Thank God that all of my brothers and sisters are on the same page concerning our Mom. That is hard to do when there are so many of us.....our parents were great, we were blessed and we try to keep this in mind. We did have arguments with our initial placement of Mom but came to feel it was the right move....want us to stay close. We are all hanging in there. This is complicated on so many levels.
You're wise to allow time to calm down before reacting. It's a very upsetting situation; both the progression of your mom's condition and the news that she may not be able to continue to live at a place where she's been happy and well cared for. If one of your siblings has been at the AL most frequently and/or has had more contact with the director and head of nursing, have that sibling be the point person in sitting down with both of those people. Have another sibling go to the meeting, too, just so the burden of interpreting everything that's said doesn't fall to one person. Your mom, especially since she's lived there so long, is not just a 'customer' to them.
Very likely there have been either an escalation of or an increase in frequency of behaviors that aren't compatible with AL. I agree that, instead of just giving notice, the person who called should have explained exactly why they feel they can no longer properly care for your mom (other than vaguely stating that she's 'not happy'). It sounds like it's a good community, so they have definitely kept a log of anything that's been concerning to them. They can be more specific.
That said, there is a level of 'unhappiness' that goes beyond what can be handled by the staffing levels in an AL. I remember a resident who was extremely sad and anxious every waking moment. When her family would visit she would brighten a bit and become calm enough while they were there (though not to any level that would be comfortable for you or I). It was not only heartbreaking for the staff to be unable to distract her or ease her suffering, it was difficult to care for her physical needs due to a high level of restlessness. Her family refused to explore any medications that might lessen her symptoms because they didn't want to "drug" her! They didn't, however, take her off of the half dozen or so other prescriptions that ensured her heart would keep pumping while her mind increasingly tormented her. Anyway, despite trying everything (except drugs), she eventually had to be moved to a dementia unit where, I have no doubt, the family got on board with a plan for dealing with her anxiety. It's very upsetting for someone with advanced dementia to have to move, so it's avoided whenever possible.
ps - I'm recounting this story as therapy for me : ) It was a very frustrating time. I am in no way judging how your family is dealing with your own situation which, I'm sure, has plenty more subtleties than you could share in a post.
Thank-you Isn't Easy for some good points. When we do have the meeting I'm hoping it will be my brother who deals with the finances and my sister who is a nurse. I feel it is not good to overwelm them with our Numbers....there were 14 of us and 13 of us living. Seven live close by and are more involved than us, the out of towners, though we all are involved at various levels...we are considered the reserves:-) to come in an help like when Mom was in rehab last summer after her knee acting up, or if area family are away on vacations(we all also visit just because we want to see Mom).......we are all trying to make the best of a difficult situation. I know medication has been an issue, my Mom has recently had some medications stopped in hopes that would help. She is only on an antidepressant at this time which was just increased the other day. We are hoping there might be some other options. We are all open to medications...a number of us are in medical professions and know there are some good meds out there. I don't think any of us realized how she was getting when we were not around. She would be cheerful when seeing us but new for us really break down and cry when it was time for us to leave. We are now learning staff finding her hard to console. I know you are not judging and happy to just to express my concerns...good therapy...finding on this site we are not alone .
Wow - that's a family! It's a testament to your mom's good mothering that you're all pulling together instead of apart. That's sadly not always the case when families are under stress like that. Sounds like you have some great resources among your siblings, too. Finding the right medication can be a roller coaster ride, but well worth it when the right one at the right dosage is found. Best of luck to you. Take some time with sorting everything out, if the community is similar to those I have a relationship with, they probably won't set a hard and fast moving date unless there's a real, potential crisis brewing. If a move has to happen, they'll also want it to be as smooth as possible for your mom.
You are now witnessing the breakdown in healthcare. At any time for any reason an assisted living/nursing home can terminate the patient. Maybe they had a change in staff numbers, are having financial problems themselves and it has nothing to do with your mom. Get her out of there as soon as you can. Even though she says she likes it there, when you move her there will be a time for adjustment, but trust me, she will not remember where she is or where she has been. It is harder for you children and grandchildren, but you must not make a big fuss about her old place. Just pretend the new place is a new experience. Been there, done that with three places for my mom as well as been a nurse in nursing homes. You have done a great job so far, just keep up the good work! My best to your family.
I don't know if this is off topic and right now I don't care because I do not have the energy to either start a new discussion or find one that fits...because I can't stop crying.
My sister and I had agreed to care for mom (dementia) so I took the first two months. She then took two months. Mom came back to me and my sister declared she was done--that she could not do it anymore. I had her almost 3 months and I am still working full time. My sister's guilt got to her and returned to say she would take her back, "but for only 1 month." My mom has been with her for only 10 days and I believe has stepped off of a ledge.
She is anxioius. She is hallucinating. She believes women come and beat her at night. She is so unsettled.
So with this break I badly needed, my sister has called me constantly saying she is done again. She says mom has to go somewhere and that she cannot do this.
I feel horribly guilty because I know I should have just kept mom here. I read over and over that moving someone around with dementia is horrible and that I / we are doing mom more harm than good. Are we?
When I have mom, it is crazy and stressful, but it isn't like how my sister is describing her right now. When I talk to mom on the phone, she is CLEARLY out of sorts that someone is going to come and take her and place her in a "home." Nursing home that is.
The guilt is overwhelming. And what hurts more is that I dod not think I can keep this up anymore. I was totally set to share mom month to month but now I see my sister is backing out again. I don't blame her. She is 65 and tired and she wants to be with her children and grandchildren. She has never had the closeness that mom and me shared.
But she isn't mom anymore. I tend to her needs when she is with me as if she was my baby and I do not know how not to. My sister, I think, isolates her more and ignores her and I kill myself caring for her.
I do not know if it is the dementia that is forcing her to act up for my sister or if she is manipulating my sister so that she can return to me.
She won't stop talking about these women who beat her up in the nursing home (she was there for a short time after the stroke because none of us were prepared...famous last words). She was not beaten up in this nursing home--this story only started about a week ago and it was the first time I heard it. The more she talks about it, the more elaborate it becomes until she has herself into a fit of rage. These rages only began after she was placed with my sister. The more she acts up the more my sister rejects her.
I feel like they are both manipulating me.
I don't know if I can take care of her much longer but I will convince myself I can because that is who I am.
If mom were calm and not obsessive, it would be so much easier. Do I find new medication?
I am rambling. But I stopped crying.
Please stay on topic or start a new discussion.
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