Follow
Share

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?
.

This discussion has been closed for comment. Start a New Discussion.
Find Care & Housing

22 Comments

Newest
First Oldest
First
I'll complete what I was writing...suddenly posted...maybe it is time to stop writing. Just feel better writing it down. Hope getting it off my mind will let me sleep. Good night out there, I'm sure alot of us are kept awake by all the craziness.
(0)
Report
Up and can't sleep......my mind is racing. My Mom is doing really bad and my mother-in-law isn't doing great either. While waiting for a bed to open in the Memory Care Unit my Mom's health changed drastically. To make a long story short she was hospitalized with a couple infections(one required surgery), fall resulting in compression fx of the spine, and they also found a tumor on her kidney. Her Alzheimers has really advanced....she got really nasty for awhile(infections, medications, hospitalizations)...heart breaking...not my Mom....but now more child-like and just cries all the time. She is in a Nursing Home....it is a good place....the help are very kind but my Mom is so confused the majority of the time and also experiencing alot of physical discomfort as well as mental turmoil....the other day she was afraid she was going to be taken to jail because she thinks she has no money, no longer realizes our Dad has died and wants him...we feel nothing we can really do but be with her as much as possible.....she wants us to take her home......she can only walk short distances now with a walker and assistance of one to two people, we thought about taking her home but realize my Mom is 24 hour care now....high risk for falls...she forgets her legs won't hold her up now.....she spends most of her day in a wheelchair or recliner out where staff can watch her. The local kids are making sure someone sees her everyday....us out of towners doing what we can do to help out and give the locals a break. The hardest part is basically watching our mother's brain damage take her away from us....she is physically there but each day we loose a little more of her.
My mother-in-law at 97 is fighting additional help. We have an aide 3 days a week for 4 hours per day and trying to get another aid in for 2 days....we made arrangements and she fired her. She likes her one aide and wants know one else. She has developed some digestive issues....constipation and than takes to much medicine, prunes, etc and ends up with severe diahrea. The MD has told her what to do but she won't listen( I really don't think she comprehends)......at one time she took care of these issues....knew how to take care of bowel issues but really doesn't get it anymore. Her answer right now is to eat little to nothing.....her aid is trying to encourage her to eat and when the aid is not there us getting food to her.....she won't come hardly at all to our house...says she is to weak. She is getting increasingly unsteady on her feet, insist on sleeping upstairs yet...recently calling me to come help her get down the stairs in the morning because she is afraid she might fall. I was over there today and her aid asked if I could be a bit more involved...my mother-in-law acts like we are never there...my husband immerses himself in work and I do what I can. It is lately getting to a point where she is needing more physical assistance. I feel bad, and yes guilty...I don't want to clean up poop, diahrea, see my mother-in-law naked where she needs assistance cleaning up...it is only going to get worse. It seems I can't help but get drawn in. I worked in the health field for years...Physical Therapist......and use to have a strong stomach but not any more. The hardest part with my mother-in-law is I don't know if I'll have Dr. Jeckyll or Mr. Hyde when I go over to help out.
(1)
Report
Just wanted to let you know things are progressing along fairly well. I just got home tonight after a good visit back to my hometown(4 of us out of towners were able to make it in....2 were a plane ride away) Us kids are still all on the same page wanting what is best for our Mom....it is not always easy.... with 13 of us trying to come to some kind of agreement. This time I think it will be easier because we have less options. The toughest was taking care of Mom at home vs. Assisted Living. Time proved Assisted Living was a good move for our Mom. We are very excited about two of the Alzheimer Memory Units we have seen, we still have one NH with a memory unit to look at...though we don't think she will qualify for that yet from what we have been told....we want to check this one out anyways since my Mom is very religious and we feel this might be her final placement after the Alzheimers Memory Unit(if she qualifies for that...can be very confusing)......she is Catholic(we are one of those last huge Irish Catholic families) and it would offer daily mass, Communion, rosary, visiting nuns etc......all those things that gives Mom peace. We are looking at all our options. We are all coming to realize Mom's Alzheimer's disease is advancing rapidly now......she really has changed drastically the last 6 months......it is an awful disease. As of tomorrow I will start looking into how to start the application process for Aid and Assistance for Veterans.....we have gotten more information and it looks like my Mom could very well qualify soon.......thank-you, thank-you, thank-you for this valuable information. We have a meeting with her AL a little over a week from now...plan to return for that......happy for the improved driving weather:-) We have a group of us attending the meeting about her new placement and will see where we go from here.
(0)
Report
Inthestorm, Just wanted to let you know we have no regrets about having Mom in Assisted Living the past 3 and a half years....don't want you discouraged by our experience....it was good, just sad and scared with it ending. We are now in the process of setting up visits to recommended Alzheimer's Memory Units and NH with Memory Units looking for the right one for our Mom. We'll start looking them over next week. We found a good fit with the AL and we will do the same again. Agree with vstefans...... should not go solo trying to take care of our loved ones.....respite, outside agency providing in home help, AL, Memory Units, NH all possibilities though know finances can be an issue. We need to take care of ourselves too., started to find that out the hard way. My Mom actually improved at the AL initially and did quite well until recently......we are coming to terms with the fact that my Mom's Alzheimier's is progressing to a point that she needs more help than they can offer. My mother-in-law(she is 96 with mild memory issues) seems to be happier now having an aide for 4 hours 3 days a week....something she finally agreed to about 6 months ago. I was just stretched to thin to give her all the attention she needed. Still involved with her care but don't feel as guilty when we can't and it is good being able to talk with her aide and the agency about concerns and how to address them. Thanks to all for your thoughts an ideas......it has been so helpful in so many ways. Inthestorm keeping you and your sister and Mom in my thoughts and prayers. MaryJr
(0)
Report
inthestorm, that's an awful story - and step one is to get your mom a thorough medical eval to be sure there is not a UTI or any of the other medical things that can make people with dementia go "off the ledge" and be crazy. there might be a medication that is causing it and/or a medication that would help as well. it sounds like Sister can't take it because she thinks Mom is just acting up on purpose, but her story is probably real to her and it came into her brain to expalin what is going on. You do need help and should not try to take care of Mom solo with no respite. Being "put in a home" - a good one, is not the end of the world and you will find some stories on here of people who were much happier in a facility, whether it is independent, assisted, or skilled care.

My mom got the notice that her assisted living could not care for her, and we were sad because it was basically a very nice place, BUT - we found one that turned out to be a better fit and she actually did a little better there for a while too. It is hard to think about going through the whole process all over again, but it could turn out OK. I know exactly where I would recommend looking into if you lived near me in central Arkansas (because I toured A LOT of facilities before deciding, and used to take pictures and show Mom, to make sure she liked the looks of it too, though that also netted a couple of rejections out of hand :-)
(0)
Report
Your mother should be eligible for veteran's aid. Your father was in the service during a time of war, and to my knowledge from helping my Aunt with hers that is the main qualification for benefits. Of course, however, they do take their assets and income into account. Assisted living is considered medical care by the VA and the payments can be retroactive.
(0)
Report
Thank you for sharing your Mom and Dad's story. I met my husband just days before he shipped out for Vietnam, and although we only had 30 years together, it was the best 30 years of my life.
Please ask the Veterans' Agent to check and see if his death might now be considered service related. The list of presumptive illnesses has been updated several times over the last few years. My DIC is $1200 a month, tax free. I am fortunate to have earned a good retirement, but I know that for some widows the DIC and other VA benefits make the difference from barely existing to living. The Gold Star Wives organization provides lots of useful info for veterans' widow(er)s.
I believe the website is GSW. I know how important it was to my husband that he left me well taken care of, so I am confident your Dad would like the same for your Mom.
(1)
Report
Thank-you MJ1012.....we will definitely be checking that out. A neighbor of mine told me( when I told her about your suggestion) her family was not aware for 3 years that her uncle as a Veteran was eligible for benenfits through the VA while in a Nursing Home. My Dad did not die from his war wound but lived with various complications from it his entire life...nothing that ever slowed him up much:-) He died at 86 y.o. and loved life, always expressed how grateful he was to have survived but we know he grieved for the men that were lost, one... a Marine who died in his arms, one.... his closest friend he met in basic training. He was considered 70% disabled from his war wound but worked every day up until a short time before his death. He had a bullet fracture his hip, pass through his body and exit the the other hip but did not fracture that one. Newly discovered antibiotics probably saved his life. He was 25 y.o. at the time, He met my Mom on the final day of his sick leave on a blind date. Their first date was in October, they were engaged in February(around the time of their Birthdays) and married in May. They were married 62 years......just thinking about their story makes me smile....feel he is looking out for her.
(0)
Report
Please check with your local Veterans' Agent to find out if your Mom is eligible for an Aid and Assistance benefit from the VA. You should also find out is she is eligible for a DIC (Dependents' Indemnity Care) benefit. That may help with the finances. These benefits are not widely advertised but as the widow of a veteran (especially a disabled veteran) she MAY be entitled to them. Did your Dad die as a result of his disability? That would be important to know in regard to the DIC benefit.
(1)
Report
You are all doing such a great job! It is amazing that family can stick together like that--so many have no experience with that....and more remarkable, that your Dad had such foresight!

Question might be, Mom is on their "2nd tier" of care, why not move her to the 3rd tier?
Since she fell, the 2nd tier may feel the liability is too great to keep her in it,
but, they feel she is not quite bad enuf to warrant the 3rd tier....
OTH, no matter where she gets moved, the probability is that she will become more confused, & will not recover her remaining wits, once moved
--elders, even ones without Alzheimers, have difficulty coping with moves--even down the hall, much less to a different facility....AND, Mom would lose contact with her best friend there--BOTH of them suffer that loss, and it will adversely affect both of them.
If she were moved to the facility's 3rd tier, she'd warrant that level of care, shortly.
But at least, there would be a greater likelihood both could keep in a bit of contact--which could help both.
Wondering if that argument might help the facility Mom is in, to keep her where she is, or, at least only move her to their 3rd tier, to keep both old gals in contact.
(0)
Report
Mary Jr: What a family! 13 kids and you are all on the same page! What a testament to cooperation. I have a really great feeling that this will all turn out fine. Be well.
(1)
Report
In the Storm; so sorry for your trouble and pain! Cut and paste your post ito a new thread so we can all talk to you! There are solutions here! Hugs! Barbara
(0)
Report
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.
(1)
Report
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.
(3)
Report
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.
(1)
Report
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 .
(0)
Report
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.
(4)
Report
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.
(0)
Report
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.....
(0)
Report
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.
(1)
Report
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.
(2)
Report
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.
(2)
Report
This discussion has been closed for comment. Start a New Discussion.

Recent Questions


Popular Questions


Related Questions

Start a Discussion
Subscribe to
Our Newsletter