My 85 year old mother with AD has lived in our guest house for the last year and a half with caregivers during the day. We moved her one week ago to a "home" walking distance from our house. We moved her because her pyschiatrist said that at this point people with AD often do better in a group setting instead of one-on-one care. She really didn't know she was at our house and was becoming distraught and just wanting to go home to her mother. We felt it was becoming unsafe and that maybe she would do better with more people around. It is a very lovely home and came highly recommended.
She is not happy. She feels she was tricked (and she was! Unfortunately we did not tell her what was happening thinking that it would greatly disturb her and she wouldn't remember 2 minutes after we told her. I deeply regret that decision.) She is feeling she is a prisoner being held hostage. The owner of the home seems very warm and knowledgeable but she has told us that it is not good to visit (or take her out tomorrow for Thanksgiving.) We've seen her once but apparently she decompensated when we left and now we are being told not to visit for awhile.
Sorry for this long message...my question is...Does this sound normal? Is it really better for us not to visit? I don't want to ask the owner because I don't want to cause problems. My husband feels she is very controlling and it does feel that way but maybe she is doing what is best. We just don't know and have tons of guilt as it is.
I'm so glad you've found your way here...the reason that brought you to this place is the same as each of us who post...and you'll find we're ALL still learning how to deal with what is happening in our lives.
I've mentioned before a very good movie that deals with Alzheimer's...it is "Away from her" with Julie Christie. I've seen other movies dealing with this disease, but this particular one seems to reflect what happens without sugar-coating.
I was surprised (in the movie) when it was suggested no visitors for the first month...but after researching, found this procedure is used in many cases. One of the most difficult things is putting our loved ones in someone elses care...but we have to remember these "someones" are well-trained in working with Alzheimer's patients...sure doesn't make it easy on us family members...but we are still believing in our hearts that our loved one is not changing...and waiting for a miracle.
You should be commended for taking such wonderful care of your Mother! Part of that care is trusting both yourself and the caretaker. Hopefully Gemini, who works in this area can give you some input.
One other thing...we still have to remember that it is US who knows our loved one best...that very difficult decision you made is much more difficult on you than it will become on your Mom.
I'm so sorry for your sadness with this holiday...many of us know exactly how you're feeling. Treasure those past memories..........sending gentle prayers...Pam
Last edited by petal*pusher; 11-26-2008 at 04:50 PM.
Welcome to the board Cmon.... I hate you need to be here but glad you found us. The group here is the best. They have great advice, a wealth of experience, great shoulders to lean on , and listening attentive ears. We are all at some point on the journey with our loved ones and dementia so we truly do understand.
What you described is absolutely normal and common place..... and I have experience much of what you described. Any move is difficult for loved ones with dementia. They lose the familiarity of their surroundings and there is an adjustment period as they slowly become familiar with their new surroundings and routine. Visitors that are part of their past life, can disrupt their routine and take them back to their need to be where they are not. That may be where they were, their childhood home, or anywhere in between. I realized with Mom, it is not where she is but the confusion in her head that disturbes her. She does feel like a prisoner.... but not of a place. She is a prisoner of the fog that shrouds her mind. She was also distraught when she was home. She just moved that distraught to a new home with her. So what you are seeing is not new. It is just a continuation of what she displayed before amplified by the new surroundings that she will adjust to.
Both of my parents have dementia. We moved them Sept 2007 to AL. It was a rush decisions because of a crisis so we didn't have time to explain. What little we did explain didn't stay with them. If I had to do it again, I would not make a big deal of telling them. You just get to repeat it over and over, upsetting them each time, and when they move you still get the same reactions. So why drag it out?
Dad was the one we were worried about adjusting. He has done well. He thinks it's home much of the time and other times it's a great spa hotel he is treating Mom too. Then there are those days he thinks he has moved on top of the mountain. He loves the view out of his third floor window. It was Mom that has given us a fit about the move. She has expressed every emotion that you described and more. She is a prisoner, we tricked her, we just did this to steal her stuff, we are in a conspiracy against her and Dad, and she has disowned us and thrown us out of the will repeatedly. She has had total melt downs and thrown professional grade southern hissy fits.
We did have limited visitation at first until Mom and Dad adjusted to their new surroundings and routine. Visits seemed to trigger desires to return to another time and place. Mom was so difficult that we did major medication adjustments for her. She was already on anti depressants and they have been changed and dosages adjusted several times. They both have an evening anxiety pill for sundowning which is their worst time of day. But all in all it has gone ok. Dad is normally happy. Mom has her happy days and those that are not so happy.... but the not so happy days are getting less and less.
As for taking your Mom out for Thanksgiving.... She has only been in her new home for a week. Loved ones with dementia process and adjust slowly to what is new to them. She would probably be set back to day one of her adjustment in her new home. Beyond that they chaos, noise, lights, people, and confusion of a large gathering are disconcerting and exhausting to those that have difficulty mentally processing what is going on. You would probably be setting yourself up for major difficulties by taking her out at this point. When she settles in and adjust to her new routine, then consider taking her out for something to small to test the waters and see how she does.
As for the guilt... throw it out. You have to surround yourself with a no guilt zone. You have done what is best for you Mom. She may not realize it at this moment but you know it in your heart and head. We have another thread about this very subject. With me, I realized that I was not guilty because or what I was doing.... I was guilty because of what I could not do. I cannot fix what is wrong. I cannot fix my parents ALZ. I regret that life cannot go on as normal. So know you are doing what is best for your Mom, can't fix the root problem, and are doing all you can do.
Talk to the facility personel. Where my parents are, they are very willing to discuss their recommendation and explain anything we ask. We have regular patient care plan meetings where they give recommendations, listen to our concerns, and together we come up with plans of action. Your coordinator made a recommendation. If you are uncomfortable with it then talk to her about the reasoning behind it. Make a plan for gradually reintroducting visits to test the water and see how a visit will go. Check with them on medication adjustments that might help as well. You can be an advocate for your Mom, get your questions answered, and still be receptive and curtious to the staff. You need to build a good working relationship and establish useful conversation with the staff and administration. So ask your questions, follow it with a compliment, and know they are there to help not only your Mom but you to adjust as well
Again..... welcome to the board and hope we hear more from you I will keep you and your Mom in my thoughts and prayers.
What you are doing is the best thing for your Mom. Unfortunately what you are seeing from your Mother is a common reaction from people with this disease. She has been uprooted from the place that she felt was home, where she felt comfortable and safe and protected. My mother asked to go to the last place that she remembered living 13515 Burnsville Parkway, almost until the day that she died. So don't feel any guilt about it. Nothing that you did or can do will make any difference on that. What you did was to make sure that she is safe and well cared for and that is the most important part.
Limiting visits is a common request if you have a patient who is anxious about going home again. It works for some folks, doesn't work as well for others, and you really don't know who it will work best on until they are all settled in. But limiting your visits is the best way for them to get used to the facility and the routine and the staff. This way she will settle in and get accustomed to the day to day activities and how they live. She should settle into the swing of things better if there isn't the interuption of visits from family every day. THat's why the request was made to limit visits.
Make friends of the staff and nurses. They are your best allies. They will be the ones to let you know how you Mom is settling in and who her friends are and how she is eating and sleeping. Praising their work and thanking them for their care of your Mom will go a long way to getting the extra little help that you will need during the course of your stay there. Ask them what you can bring that will make your Mom's room mor like home for her. Can she have her own bedding, a chair, some pictures? LIttle things might make her feel better, but you never know...
You have to remember that your Mother has no short term memory so she will continue to ask you to take her home, so for now you are the bad daughter...(Hello, my name is no no bad girl, what's your's?). Keep your chin up and hang in there. What they are doing is for the best...
Thank you all for your responses. I guess the main thing I've learned in the last 24 hours is that my mother's response is not abnormal and that my guilt is common. I guess I'm still not convinced that I have done the right thing by moving her. Her mental health has greatly deteriorated in this one week.
We moved my mother into a "group home" type setting. A house in a neighborhood with 4 other residents. There are three careproviders and only one of them speaks English. That's not uncommon in Tucson! This home came very highly recommended so I glossed over the language issue because the women are very loving, touching, hugging people (even though we don't understand them!) I was concerned about the language difficulties for my mom and I still am but she seems happiest with the providers that don't speak English. She currently "hates" the owner who does speak English.
Anyway...thanks so much for your input. I'd like to know how to find the thread that discusses this issue.
Actually what you explained about the caregivers makes perfect sense. It is very common for the speech, language understanding centers of the brain to be damaged. An analogy I read recently likened it to watching a movie in a foreign language. You may not understand the words but the emotion translates from the facial expressions, body language, tone, and other expressions that go with the words. Even if your Mom doesn't understand their words she does understand the emotions they transfer to her. With her decreased ability to express or understand the spoken language... the emotional language is most important.
My Mom has diagnosed language difficulties. She does not process the auditory. If I come in with a calm happy mood, laughing and smiling... she will follow suit..... no matter what I say. If I am anxious or in a bad mood... she will follow suit as well.
So don't sell the caregivers short because they do not speak your language. Evidently they are speaking your Mom's emotional language and that is why she is happiest with the caregivers that may not speak your language.
As for her "mental health".... she is processing a lot which is new with reduced cognitive abilities. She is in a new place, with new people, and a new routine. She very well may pick one person to take her fears and frustrations out on. Mom picked one of the administrators. She would rant and rave at her when there was something she didn't like. Yet Mom enjoyed the outtings, activities, and socialization. She raged at the daughters for a while but that has wained. She is basically back to where she was when she left home..... just in a place where she is loved, safe, and well cared for. The road was not easy..... but it has been 100% worth the effort!! Give your Mom time to adjust.... this might take a couple of months to see how it is going to go.
Go back to the main page of the Alzheimer's Disease & Dementia Message Board and look for the topic..... Holidays-I feel so guilty.... to find the current discussion of guilt. There are lots of other great topics you might want to read as well.
Thanks Deb. I've been feeling really sad today. First time in 51 years that I haven't had Thanksgiving with my mom. I've been using what I think my dad would approve of as my litmus test as to how to care for my mom. I felt he would have been very happy that she was at our house but I'm not so sure how he would feel about this move. Your words help.
I watched that movie, Away From Her, after seeing it recommended here. I had questions about the no-visits-for-a-month policy. I think my MIL remembers us now only because she sees us everyday. I play a little game with her everyday, telling her we'll see if she earns her gold star by remembering my name. (If this upset her, I wouldn't do it, but we both laugh whether she remembers or not.) Some days she does, some days she doesn't, though she always remembers I'm her daughter-in-law. If I give her the first letter of my name, she'll remember it. But she often doesn't remember her other son's name. She always remembers the other daughter-in-law's name and talks about her all the time, how beautiful and nice she is. I get sick of hearing about this wonderful person who hasn't done squat to help out, just like her husband, the other son, who has washed his hands of her. But to get back to the point, it just makes sense to me that seeing us regularly helps to keep us in her fading memories for as long as possible. The movie actually confirmed that for me. I would be concerned about that when and if we need to place MIL. I know the experts know a lot more than me, but I'm not convinced that this is the best way, especially if the loved one goes willingly.
<sigh> Just my two cents worth. I'm still reading and learning.
Hi Emily! Glad you had a chance to see this movie...NOT visiting for that month is certainly different than what my family did also (we made sure someone was there every day for the first couple months) ...that's why I was surprised when this was in the movie, but after lots of reading and asking questions, was told this is a very common approach. I was impressed with this movie because it reflected more accurately what the patient and family face.
If Alzheimer's is the particular dementia your MIL has, there will come a time she does not recognize you at all...she'll most likely respond to you because she knows you're someone who loves her.......but, believe me.......it's a bumpy road! The time will come when she will have no response at all to anything, but perhaps a drink or food set before her. (at least this still remains a constant with Mom...) Remember, this is a progressive disease, and the stages are apt to take different amounts of times in each person. My Mom is in the last stage...it has taken 10 years for this horrific disease to take her on this journey.
I also identified with the "friendships" portrayed in this movie. In the beginning, Mom quickly identified with those at the same stage as her...soon she was walking hand-in-hand with an old fella who seemed as attracted to her as she was to him. They convinced each other they had been friends long ago...and seemed to bring comfort by their friendship.
One particular quirk in Alzheimer's is that memories from long ago will surface...your MIL's ability to remember you from previous times will still be "in there"....you'll be caught off-guard at what she will bring up and talk about. Treasure those moments, because it soon is replaced by blank stares and jarbled words...then no response at all.
Sooooo.....Mom was visited regularly in beginning (however now not by anyone but me...sigh)....FIL (4th year into Alzheimer's) rarely had/has visitors...and he seems to have a little recognition still.........each victim is just so different.
When you mentioned "especially if the loved one goes willingly" this is a very rare occasion. Most of us have to coerce or trick our loved one to get them to this environment.
I sure agree with you....there is just so much for us to learn................Pam
Thanks, Pam. So far, my mother-in-law is quite happy being with us. We told her we think we should sell her house and she quickly said that was a good idea. She doesn't seem to miss anything from Arizona at all! She loves going to the day center twice a week. She's far more compliant that I ever even hoped for. (Not that this isn't hard, but it could be a whole lot harder!) What happens as she progresses, though, will be anyone's guess. If she remains sweet, like she is now, it will be easy to convince her that she'll enjoy being with people her age all the time. Maybe we'll be the rare ones who won't have trouble at that point.
This has been yet another very helpful thread. My eyes are always being opened to those things we aren't needing to deal with yet.
I am so happy for you that your MIL is compliant and adjustable - she sounds like my dear Mom. I was just thinking of how she made the best of the NH, turning it in her mind into an 'expensive spa with a Swiss chef" and really believeing she was in an exclusive club! Always happy to see company - even when she didn't know who we were - but never complaining about not having any. Mom never knew it was a nursing home; at first she thought it was still the Rehab center from which she would go home as soon as her leg healed, and later she felt she was home. Only towards the end did she begin to talk about 'going home' ... whether she meant to her childhhod home and her parents or to heaven, I don't know. Actually I believe she is with her parents (and my father, and Mom's two brothers) now on the other side, so in reality both mean the same thing ....