The Mayo Clinic recently suggested a list of things to consider about when it’s time to find full-time care for your loved one:
Caregiver’s own health is being compromised (including sleep deprivation). Caregiver’s own physical limitations (lifting, mobility). Caregiver is experiencing loss of work and/or the inability to manage other household or family responsibilities. Sufficient respite support or qualified home care are not available or become unaffordable. Symptoms of the disease are evident and challenging to manage at home (incontinence, aggression, paranoia, wandering). Person with disease needs more supervision than can be provided at home. Home environment is no longer safe (negotiating stairs, getting in and out of bathroom, narrow doorways). Person with disease is becoming more dependent with more activities of daily living such as eating, dressing, bathing. Person with disease is experiencing weight loss, dehydration or simply refusing to eat. Proper medication management is compromised. Person with disease no longer recognizes home as home.
To this I would add my own thing to consider: when the caregiver is starting to buckle under the stress and cries at the drop of a hat because of all the strain, and her own health is getting worse faster than that of her DH.
I just wondered if anybody else recognized themselves anywhere in this list.
I added "placement criteria" to your discussion title because I wanted to make sure everyone reads it. Very very good information. Thank you.
Remember everyone - statistics show that caregivers place loved ones on the average of 1-2 LATER than they should have at the expense of their own health.
yes, i experenced all of the things listed, i didn`t reconize them but my daughter did, she was getting concerened i was getting worse than him, when i look back on it ,i was. every thing on the list is what he was going through,putting him in a nh was hard but the right thing to do,he gets mad at me whenever i visit but hope it will get better in time, i haven`t seen him in 5 days and having second thoughts, did i do the right thing, guess i need to go and get a good dose of reality, was told to stay away for awhile so he could adjust, gets angry when i visit. i know it`s hard to place your loved one but sometimes it`s the only thing to do, i don`t have the stanama that joan and a few others have god bless them.
"Symptoms of the disease are evident and challenging to manage at home (incontinence, aggression, paranoia, wandering). Caregiver’s own health is being compromised (including sleep deprivation). "
These are the two factors to which I can relate. Even though my husband is manageable in other respects (except for the driving issue) the combativeness and aggression is causing my Alzheimer's Association contact to advise me to look at homes and be prepared for placement. He is very negative towards me, says that I am here for his money, am not a good wife, he wants a divorce and that I should leave. Sat. night he was physically abusive; I called the Alz Assoc who advised me to phone 911. The police came. They could have taken him to the psych dept of our hospital or to jail. I waived the charges but told him that next time I won't. I am so depressed. Never thought that he would need placement for this reason. He is physically in good health and I thought we would have several more years together. I thought perhaps I would place him in respite care as a trial when I go on the February cruise. May not be able to wait that long. My Alz Assoc adviser says that if I wait and he gets more aggressive I may not be able to find a place for him. I am already feeling guilty for even considering placement!
uncontrolable aggression would be the dealbreaker for me as well. nobody is expected to live in fear for you health or life. sometimes it comes earlier than we expect-divvi
marygail - how long has your husband been in placement? I know that mine is going to have to be placed soon but the two times that he was in the hospital, the first time 2 days the second time 5 days he became very, very angry at me. I don't know what will happen when he goes.
Dee-I waited too long and had a very difficult time finding a place that would take him. Had I started earlier I think husband might have adjusted more easily.
Yes, I have been told that the longer I wait the more difficult the adjustment will be. Sure wish we had taken long term care insurance when we were able to do so!
ehamilton, it has only been 3 weeks and i`m not going to lie, they were difficult weeks , the only way we got him there was to tell him they wanted to see if they could make him better, was a lie but he was not going to go. he seems to be adjusting ok but when i go to visit he crys and says he don`t like the place, yells at me in a quiet voice, i guess so no one else can hear him, they say he is a perfect resident so good for them it`s only me he gets mad at, the nurses tell me it is normal for them to get mad at the original caregiver, that would be me.i was told to stay away for a week to see if he adjusts a little better, no one has called to tell me he is awful. I plan on seeing him tomorrow or Sunday, we`ll see what happens then. I no longer think i did the wrong thing, just had someone over to my house to talk to me , she just left and she reminded me why he is in there, took someone who went through almost the same thing to make me see, no more blinders on the eyes.good luck with placing your lo. you can contact me at my e-mail if you want to talk more, should be in my profile
I have already told Sid that physical abuse is the deal breaker for me. If it ever happens, 911 will be called, he'll be hospitalized, and if drugs can't control it, he won't be allowed home. We all have our limits, and physical abuse is mine.
Joan, I agree with you about the physical abuse. BUT....if the verbal abuse becomes so great that it's doing a number on the CG - that would be a deal breaker for me also.
Uncontralable Mental abuse as well as physicall abuse would both be mine, I think. I don't stand up well to his talking down to me the few times it has happened. Also, observing daughter and MIL marriage. The other day an event I observed just sent cold chills up and down my back. I was entering a store, and a car, with windows rolled down was a short distance away. It was a young couple and she was in the drivers seat. He started yelling at her and could be heard quite clearly a distance away, and continued for several minutes before she drove away. I don't know if he had been drinking, or not done something we liked or what but nobody deserves to be humiliated especially in public. If she was his wife, I hope she gets a divorce.
I remember only too well the terrible loneliness when I came back to a very empty house after placing my husband. For a long time I felt like a self made widow. I could scarcely breath. I wandered from room to room wondering how I could ever live totally alone. My husband thought he was in jail. Wondered what he had done wrong and there was no way to console him. I wanted to die-but I am still here and though his mind is in another place so is he.
doneit, i know how painful it has been for you -we talk about aggression and physical abuse/verbal abuse, you have had it all dear one. your DH was one of the extreme cases where medications didnt subdue his behaviour so placing him was the absolute only option-unfortunately with FTD, sometimes they dont respond to any medications at all, and they backfire as was your case. luckily seroquel works for some but adjustments and dosing can be tricky as you know. i think about you alot and know how extremely difficult it is to suffer the torture of having one placed in a psyche ward never to return home. never having had that adjustment time to prepare- my heart breaks for you. i am praying that before your DH leaves this world you will get another chance to make your peace and get that loving look you so long for. divvi
Last August I gave up care giving.My husband had been verbally abusive for about Two years and then became physically abusive. When he saw the bruises the next day and then the next, as they became darker he asked what had happened to me. He did not remember and would not believe he had inflicted the injury. On another occasion, he attacked me with a pressure washer, but I managed to run to the car and stayed there until he "cooled down".When he threatened to kill me so he could so what he wanted to do I decided I had to make a decision.It was difficult. His family agreed that I should no longer try to look after him
His daughter and her husband agreed to have him live him live with them, There have been few outbursts of anger but he responds well to his son in law. Generally the situation seems to be OK. They will look after him as long as they can and then he will have to go to a residence. The money also contributes to their daughter's university education. I have not seen him since August as they live across the country.I find that difficult. Seeing him may upset him. The daughter is concerned it may disrupt him terribly.The AD is progressing but he is able to bathe, and dress himself. He rarely speaks of the past.But then he rarely speaks at all . He has lost most of his verbal skills
I'm trying to adjust to my new life style. Since I had been a caregiver for 7 plus years I was involved in few outside activities.Trying to find a new life for myself is a challenge, however I don't regret leaving the abusive situation.
I recognize all but the incontinence. The worse is the paranoia, aggression and wandering. I was crying over everything. It has been 16 days since I placed DH in a memory care facility and I am returning to a normal "me". My mother, my friends and DH's caregiver who lives with me all see the new me. I had no idea how much stress I was under. This is not a job for one person no matter how much you loved them (the person they used to be) and how long you have been married (34 1/2 years plus 4 years before). The marriage vows say in sickness ... it doesn't say we have to do the job alone. I am caring for DH in the best way for both of us by having him cared for by others who can do a better job. He is safe. I am happier. I will love again. If DH was aware this is what he would want too. Anna, you are doing the right thing. He is gone, only the physical body remains. I have not seen DH since I placed him on 4/10. He will move to a larger facility this Thursday and then I will see how it goes before I see him. We both need to adjust.
Our doctors already want us to start thinking about placement. Jim's FTD is progessing a a frightening speed. There are changes DAILY. Two days ago I finally needed to ask for some in home respite and today when the social worker came out from the VA and saw the change in Jim in the last month, picked up his phone and arranged for us to get 2 hours three times a week. The Personal Care Assistant will help Jim "decide" to get into the shower, make sure he is safe in there, vacuum for me and care for him while I get out with my Mom for a while. I feel so relieved. He is beginning to show stage 5 symptomsI (out of 6) he is pacing, disoriented and confused. He is can't concentrate anymore, reading the paper is just about impossible. He has lucid moment, but they are only moments. It is everyone belief that he may need placement by the end of the year, probably sooner. I just pray that he makes it to Courtney's wedding in July. At the rate he going I'm not so sure. I'm so scared.
Susan i am very glad you are getting some added help from the VA. every little bit helps so much and hopefully will enable you to keep him home a little longer. divvi
I placed my DH in assisted living as of this past Saturday. But all week, we were moving over his things. Literally everything fell into place from the moment the social worker came and said he needed to be in assisted living because he got no stimulation day after day while I was at work and he had no motivation. He had become verbally abusive to me more and more in the past year and the straw was him wrestling some paperwork from me and in the process grabbed me by the throat, hit me in the face and pushed me down.
Today when I visited him, he said he had no one his age to talk to. "Everyone here is old!" They all ask him why he is there cause he is so young. He's 69.
The house is so peaceful but it was hard to come home today to no one here. He even has the dog ~ which is helpful for him. I don't know, today was like an ambush with the feelings of being such a meanie. Yet I know in my heart that everything came together well for a reason. It just isn't easy any way you look at it.
For the past few weeks I've seen a greater decline in my DH. Some incontinence accidents, not getting enough sleep, DH not knowing at times who I am. I believe he is now stage 6 of AD. This morning we had a talk and in some way he seems to understand that we may have to make some changes. He wants me to have a good life. I'm crying all the time. I want him to have some joy by being in a place that might make him think he is in a hotel. He used to love hotels. We're going to look at one of those larger residental care centers. It is so sad when he doesn't know me at times. For him, I wish that he can adjust to a life and make new attachments to other people. He likes women. Though, he is still so young and I'm not sure if there are any other younger people. This is the hardest thing and the saddest thing, even just thinking about it. I even thought, perhaps I'll just place him for a week so I can get respite, and see how that works. My thoughts and love go out to all of you who are in this situation.
My husband is very genial on his meds. Never a sour mood. Unable to do much for himself but watch unending TV and sleep. Whats really getting me lately? My house smells like a urinal, even with me and 2 aids constantly washing, scrubbing, bleaching, steam cleaning etc etc etc. I feel like my poor house is being ruined. Guess I should be grateful he is a happy self centered camper.
Sheltifan, Use a cup of vinegar in the rinse cycle on the washing machine. I did that back in the day with diapers ( we didn't have throw away diapers) It not only takes the odors out but it will rinse out the detergent. I had the whitest diapers in town.
There is a great article in the Alzheimer's reading room on placing - the questions we ask ourselves. It is called Alzheimer's Caregiver permission. www.alzheimersreadingroom.com goes along with what has been talked about recently