Last August I brought mom from the east coast to live with us. I found a rental that would accommodate her and my four teenagers and we thought we would be able to stay here for three or four years. Our landlord recently let us know that he is going to sell his property and we have to be out. I will not be able to find another place to accommodate us again so I have been looking for an assisted living place for my mom. She has early onset Alzheimer's, is 65 and is still high functioning. I help her with her meds, food, and financials. She dresses herself and has no incontinence issues, helps around the house and does not wander ( she is too afraid to go out without us since she is not familiar with the area). The Assisted Living place I found is wonderful and feels like a community. I told her the other day I found an apartment for her to go and live in and she freaked out. Threatened to hang her self, said she absolutly will not go and tried to take off in her car but luckily my husband had already disconnected her battery. We did not get much sleep that night cuz we had no idea what she would do. She was up all night pacing, picking at her face and nails. I know she sis scared and we tried to reassure her that we are still going to there for her but nothing helped. The next day my husband tried to calm her again because she thought I was going to tie her up and send her to a sanitarium. He finally told her that is was still possible that she could come with us and that calmed her, so we have just left it at that.
We are scheduled to take a tour of the facility in a few days and I know she will not like but she has to go there. My questions are:
Should I put her in respite care and then move her stuff in?
Should I have her help me move her stuff?
I know that she will not go willing or easily, but how do I minimize the trauma for either one of us?
Thanks for any suggestions!
The following user gives a hug of support to MountainEd: ninamarc (05-30-2011)
i so feel for you. those are really hard questions to answer. how far will you be frpm her? i never dealt with this type of situation. we had home care for my mom 2 days a week and that didnt go well, but we had no choice. one day my mom fell out of bed and my dad had to take her to the hospital. she hit her head and had stitches. the hospital would only release her to a nursing home. after 3 weeks we moved her to another nursing home that had a locked down facility. it was a horrible 7 months for my mom-dementia was so bad, but she kept saying she wanted to go home. she passed after 7 months. it will be 2 years june 5. more experienced people on this board will help you find answers. i am sorry i couldnt help you, but just wanted to reach out to you. the support on these board is incredible.
The following user gives a hug of support to debbie g: ninamarc (05-30-2011)
Gees, I am so sorry you will have to move out. Are you saying you won't find another house that can take her with your family? I feel for you. However, it may be beneficial for her to go to this assisted living place. You need to show her the place first. Ask some staff there to show her nicely the place and explain to her the routines and etc.
You should ensure her you will see her a lot. Dementia will get worse and moving is also a trigger to make her worse in her confusion. But if this is a final place, once she gets used to it in 3 months, she may like it a lot with peers and activities.
My father-in-law went to the residential home last summer when he got worse at home - the home care was too expensive and he was too sick being at home. After he moved, he has flourished although he still gets worse with Alzheimer's. Everyone there likes him and he is positive with them (unfortunately he manages to be negative with us as manipulation or clinging to his family.)
Now respite care or long-term is not the point. You need to make her feel safe. Saying white lies to her is OK too. Tell her wait in the new home until you get a better place later. She will forget about the move in the future or get used to the new place.
She may like it. Give her a chance. She is afraid now because she cannot cope with anything new. Ensure her everything will be OK.
We "lied" or made my FIL believe he was coming to "work with" my husband. We moved him to another state. Well the fact is he is retired with Alzheimer's and no way he will work whatsoever, not to mention my husband's career has nothing to do with his Dad's old career.
He is so forgetful now so he goes with the pace of the new home although he is lost about why he is there and why he is not "working" with my husband... At times he forgot why he wanted to move and lives at the moments only.
Try to soothe her or make her believe in something positive. Since she will forget and get used to the new place, things may improve.
Seriously, she might just like it when she sees it. Trying to understand what is being said to her is very different from seeing. Even if she doesn't like it at least she will know it's not the horror show she saw in her mind. I was serious about not discussing it with her as before. If you take her just tell her you are going to a meeting. If you are lucky she will like it and then it is her idea to go there. If you do talk about it... talk about how wonderful it is and not that she is going to be there. You want to keep it all as positive and unfrightening as possible. Just the idea of moving is scary for those with memory loss.
There is a great book... "Moving A Relative With Memory Loss, A family Caregiver's Guide" by Laurie White & Beth Spencer. It gives great tips and tricks when moving a love one.
We found it best to "entertain" Mom and Dad for the day while we set up their space as near like their room at home as possible. Does she have a friend she could go see for the day while you do the move? We actually took Mom's queen size four poster Planter's Rice Bed!! It was HUGE in the room but it was their bed that they recognized. We also took her chest of drawers and mirror, Dad's dresser, and their two favorite chairs. We made it look like "home". When they walked in the first time their stuff was there and in place. Dad knew his green chair and immediately sat down in it. Mom wander around, recognizing her things but wondering how they got there but it is less scary with their things already there in a nice place.
Respite to AL is actually two moves and the less moving the better!!
Know that adjustments don't come easy. It can take 3 months or more for them to truly settle in. If your Mom doesn't settle in, or during the transition, you might want to ask her doctor for something to ease the transition. I will say here like I have said many times... I am not a fan of Xanax or Ativan... there are other medications that will help much better without the side effects and roller coaster effect of these two meds. Emotional pain is just as important as physical pain and both should be treated if needed.
You also need to decide if it would be best to visit often in the beginning to reassure her or to stay away for a while so she can adjust and become a part of her new community. You can ask the staff for guidance on this one and use what you know about Mom to make that decision.
Sorry you are having to go through this with but glad you found us here This is doable but you won't truly know all the ramifications until she moves in. My Mom was probably the worst case but just know... it does eventually get better one way or the other So welcome and hope to hear from you again soon!
Just want to add that everyone is different. A tour in the new home may or may not help her. It would help if the staff or director/nurse comes to your place to talk to your Mom about this place. Also ask her to help moving and tell you what stuff she would like to bring. (probably not for now at this moment but later.)
Thinking back, my FIL was tricky. Once in late 2008 we drove him to a nursing home/assisted living home and showed him. Well he hated the drive as usual and didn't understand what is there to see (my husband just made it an outing.) Naturally he had some drink in the home and then right away wanted to leave. So we drove him away. He thought it was a bad outing. But I think somehow he figured out those people on the wheelchair are not regular. The director was talking funny about apartment... Somehow he knew it in his mind, I think, and asked to leave right away. It was a tricky one but he was able to relax shortly in their Catholic chapel.
The first time we mentioned an indepedent living in late 2004, he said we had set up some conspiracy. Yet in the fall of 2004, once he mentioned he might come down with dementia and wanted to go to a nursing home nearby selling the house to them.
When he got sicker, it was impossible for him to want to go to another home. He thought his house was like a nursing home given the one on one home care.
In his heart, he always wants to "work with" my husband. So if the nurse told him it is retirement community here now, he smiled but didn't really buy it thinking I am here to work with my son. Where is my son and all that...
It is sad that we have to be so tricky. But he is the one that has gone crazy about working with my husband for a long time, and we just try the best to protect him.
You might need to get a cup of tea or coffee before you start reading this. I apologize ahead of time for the book I am about to write.
Last year, on August 8, 2010, I joined this group and asked for advice about moving my mom into assisted living. My sisters and I took her familiar living room and bedroom furniture and got it ready for Mom to move in. My sister was going to stay with her that first week. We all now know that was first of many mistakes. Mom was furious at us, crying that we had no right to do this to her. She felt she was being put in a nursing home. She's 85 and asked me why was she there with all those "old" people, especially those with walkers, etc. Things didn't get better, even though my sister was with her. Mom called me insisting that I get her out of there. She threatened to take a cab if we didn't take her home. She was so upset, she started choking on her food. No one from the facility visited her or invited her to any of the meals or activities. My sister dropped her off at bingo. Afterward, the caller asked my sister what my mother's name was, in case she won the next time. Shouldn't that have been an opportunity to introduce my mom to the other bingo players so she could make some friends? Mom loves to cook and is a fussy eater, so she ate nothing but a ham sandwich. She was upset that she couldn't cook. Then we made our biggest mistake. After only a week, my husband and I went and brought Mom home with us.
Mom stayed with us from September through Thanksgiving, when she went to Colorado with my sister. On January 3, Mom was back with us till Easter. Next mistake--I didn't get anyone to help me. My husband was wonderful, but he had work to do. Slowly, but surely, my life as I knew it no longer existed. Mom is sweet, but very set in her ways. Her routine was breakfast, game shows, lunch, soap operas, figuring out what to cook for dinner, out on the balcony for a little while, then either shop for or prepare dinner, then news, Jeopardy, Wheel of Fortune, game show network and then Everybody loves Raymond till bedtime. In the beginning, I was taking walks on the beach while she stayed with my husband, but after a while, I just went through the motions, staying up after she and hubby went to bed, watching tv and eating. Everywhere we went, Mom came with us. My husband and I had no time together. My doctor told me I had gone into a situational depression. My sister took Mom to Colorado around Easter time. We decided to have her 6 months each, so she wouldn't have to transition too often. My sister has found a wonderful person who stays with Mom 3 days a week while she works, but she told me it is still really difficult because she has no time to spend with friends or her husband. I know now that before Mom comes to stay with me I have to find someone to help me out. I am also going to attend a support group.
I really shouldn't have waited this long to write. My sister and I are wondering if we should continue with this or try another assisted living facility. Mom is still with it, knows all of us, still cooks (as long as you put away each seasoning right after she uses it. If not, she'll forget and put it in again and again). She hasn't been home for almost a year now, but doesn't realize it. She's been with my sister since the beginning of May, but thinks she's only been there a week or so. I think I can do it for another 6 months starting in November, but are we doing the best thing for mom?
Is it better to get her established in assisted living so that she will be in familiar surroundings as the alzheimer's progresses? I have experienced so many feelings--angry, guilty, sad, overwhelmed, frustrated, etc., etc., etc. At least, I'm proud that I managed to be patient and Mom was very happy.
Gmom... bless you and welcome back. I so understand where you are. The difference is that we didn't bring Mom home. Actually it was Mom and Dad we had to move into AL.. but Mom was the one on a rampage.
I read what you wrote and it brought back memories. Yep, Mom cried, got angry, called and chewed me a new one, threw me out of the will, threatened to call "Two Men and a Truck", requested a taxi to take her home, and even called the police and reported that we had stolen her van! She refused to eat, she refused to leave her room, she would not participate, and was generally unruly. This was all on a good day. The bad days tended to be hysteria. She was just fine and she didn't know why we were "locking her up". Throw in that she would get Dad upset. Dad was fine as long as Mom was happy but Mom was not happy at all. Dad, in his dementia, was either protecting Mom or angry with her.
Nobody stayed with Mom and Dad but there was way too much visiting. Mom never oriented to the facility. This was partially because of her dependency on the girls but partially because her room was at the end of the top floor. It was too easy for her to isolate herself. I also blame the facility for not properly orienting her into her new community. But the girls knew that none of us could successfully keep her at our house. Then the biggest mistake happened. Dad started wandering out of the building because of his delusions caused by A-fib. The facility insisted he be placed in the locked unit... and that is where he needed to be. But they were going to leave Mom in AL and that was NOT going to work. She went off the deep end. Long story short they both ended up in new locked unit and Mom spent 10 days in a geriatric psych unit. That was 27 months ago and life has been so much better since. Mom is functional but chemically content. She smiles at me instead of yelling at me. My only regret is that we didn't find the right combination of medications sooner!
Yes, your Mom is going to need more and more help. She is going to be able to do less and less for herself and will understand less and less of what is going on around her. It is going to take more and more of your times. Even now you are dreading the next go round. You are definitely going to need help.
Suggestion. Look for an adult care center that she can go to. Orient her to being somewhere other than with you. You may want to check with her doctor for medication to help take the edge off her anxiety. As she adjust then try respite care in a facility. Tell her it's only temporary because you have an emergency. If it work ok... then just extend it! Don't tell her that she is going to live there forever. Tell her something short term and then just let it go on and on. When I finally moved Mom and Dad here I told Mom it was just until Dad got better. IT didn't work every time but it did work sometimes. Other times I told her she was at that fancy spa hotel she always wanted to visit. This worked because there was a walk in whirlpool tub! Just be sure that you find a facility that specializes in dementia. If you don't want to go the facility route again... at least go with the day care and respite weekends so you will have some times to yourself! Again I would recommend that these be out of the home so she will get used to not being in your presence. There may very well be a time in the future that there is no choice but a facility.
Yep, been there done that. Some don't go easily into this disease and it appears your Mom and mine are two of them Keep typing. We are here and we understand!!
PS.. nothing wrong with long! There's a lot of venting to do with this disease!
I am so sorry that your Mom was very upset at the home and you had to take her back.
I understand that you were so tired to be with her all day, Have you thought of hiring part-time caregiver to be with her so you can have a break? Or a day care center for her?
It could also be the nature of the AL home. You should try the dementia unit or memory unit where it is secure and she cannot wander out. Also the memory unit may offer the programs for the dementia people. If you put her in a regular place with other "normal" seniors, it may cause her confusion. She cannot do it by herself and needs a caregiver or a group to help her out. If it is a place that suits her needs, she may stay given 1-3 months. Obviously she is still too alert.
Perhaps you do need to wait until she is worse in her memory and does not care where she is or does not know where she is.
We sent my FIL to this residential home for memory impaired last summer. He no longer knows his house and his elder son and that kind of thing. So we were able to trick him to be in the new place and he loves it. There are experts there helping them who have bad memory... We had 24 hours care back home for 3 years and we used a professioanl home care service. Eventually he was too confused in the open environment back home and mistook the female caregivers as his girlfriend or wife (as he desires.)
You can either find a better home for memory impaired, or wait until she gets worse and does not care about your house or does not know where she is. It will take a long time.
Please consider home care service. They will have good ideas. However, the home care may not encourage you to send her to a memory unit (their job would be in peril.) It is up to you. We did it because my FIL was too sick last year and it was lots of money (24 hours home care is more expensive than a residential home. We don't live with him at all but we visited.)
It is really a long shot. I mean, my FIL is 90 and he has been through so many crises and is still up kicking! He now is on a walker having trouble walking and is on pureed food... He may still have 1 or 2 more years.... It is really so long that we are amazed by it...
Hope you will find a better way for dealing with your Mom!
Nina may be on to something. Mom, and Dad, did much better in a locked dementia unit than they did in AL. There was too much freedom, too many responsibilities, and too much confusion for her in AL. The smaller homey environment of the smaller locked unit, along with the additional support and supervision was much better. Also, those that work in these units are more adapt at dealing with dementia related behavioral issues. So that might be something you might want to look into
Until you decide if you are going to try AL or a locked memory unit (where my mom is) you have to come up with a plan for the right now. I understand how it can become all consuming..how it can take over our whole life.
So..you have to work your way around getting quiet time for yourself and alone time for your husband and you. Which might mean bringing in a part time "companion". She can come in for few hours a few days a week or she can come in as many hours as you need or can afford. You will have to be tricky and introduce her as a friend who is coming to help around the house. We tried to hire someone to sit with my mom when she was in her independent living apt. and my mother shooed her away within the first week. She didn't want anyone in her apt. looking over her!!!! As long as your mom is in your home you can hire someone as though it is for you.
Independent living also became overwhelming for my mom. Just going to the dining room freaked her out and got her all upset..she refused to go...and the reason we later found out was because they handed her a menu and she couldn't understand it, so she was scared and embarrased to go any longer.
She broke her hip..wound up in the hospital and rehab for a few months and then on to AL where she was still in over her head...once she was into the locked unit it took her a few months but she got the hang of it and felt safe and cared for there. Routine routine routine is a must for them with this disease and the locked unit was what worked for mom.
Good luck...we all understand what you are going through.