I placed my 72 year old, physcially healthy husband in an ALZ ALF. My husband has stated many times since his diagnosis 3 years ago that he doesn’t want me to have to take care of him. He is continent and he is in early stage 6. He recently scored 8 on the MME. He has good verbal skills although poor memory and has been unable and uninterested in anything but sitting and doing nothing, or watching TV. We live in a small town (10,000 people in the county) which is 100 miles from anywhere. We have no adult day care and limited in-home help. My current caregiver and I were finding the day to day dealing with ALZ too much stress and neither of us were enjoying life. The caregiver gave notice that she would soon be moving on. I had no energy to look for a replacement caregiver. I have no relatives living close and most of our friends are busy and having a good time and don’t care to visit. My husband has very few friends locally so having him living at home became a life of one day at a time, giving up most my individual interests to be around him, listening to his repetitious questions and statements. My siblings and adult children were very concerned that I was wearing myself out and supported placement (some even urging placement). Moving to a larger community would bring more resources but I would have to start over with friendships and activities.
I placed my husband one month ago. He is one of the youngest in a very good ALF that has 24 residents. It is 100 miles away from our home so I can only visit 1 or 2x a week. It has a waiting list and has few vacancies because it is lower cost that the other ALFs and has all private rooms. He enjoys the staff but he says he cannot find anyone to talk to since he says everyone is “out of it”. He seems to tolerate it when I am not there, but when I visit he is terribly despondant, crying and sobbing for hours and asking when he can go home. I feel like I made a huge mistake placing his so soon but I also absolutely dread the thought of bringing him home and doing ALZ 24 hours a day.
I have yet to find one person (doctor, friend or relative) who thinks that this placement was too soon, but I have a terrible time visiting my husband and seeing him there with so many residents who are totally unaware of their surroundings. He says he hates it there. I have read all the post about placement and it seems like there is an agreement that everyone waits too long. Has anyone had experience with placing “too soon” and what have you done?
Thanks for all of you out there in this community. Reading the posts for the past several years has been very helpful.
Welcome to my website. I noticed that you joined last spring, but have not been posting. I have no experience with placement as of yet. However, many of our members do, and will be along later to offer their advice and support.
However, I think you realize you made the right decision for you and your husband. When you can't do it anymore, you can't do it. You will endanger your own physical, mental, and emotional health if you try to do the impossible.
I can only imagine the emotional pain you are going through listening to your husband cry and protest. I am sure it is heart wrenching, but I am told that eventually most AD patients do adjust.
If you cannot find a doctor, friend, or relative who thinks it's too soon, I think you have made the right decision.
Like Joan, I have not had to make the horrendous decision to place my dh. I think, Hikergirl, your question is one that only you can answer. You had the 24/7 care, and few options in sight. You had to think of your physical and mental capacities. They are different for everyone. You made the decision and are doing your best to live with it. Your dh will not get better or go into remission. I am sure it won't be long when you will be more comfortable with your dh's placement. It must be difficult to hear him protest and cry. That won't go on indefinitely. Hang in there.
from your post it looks as though you are seeking justification for some guilt due to the early placement?. if he was physically healthy, still verbal, continent, and enjoyed watching tv i guess for me that would not warrant placement as yet, but thats my own opinion. some caregivers make the decision due to their own emotional and physical capabilities instead of considering only the spouses. i hope he adjusts soon and you find peace with your decision.
Hikergirl...I can only imagine the emotional pain you are going through worrying if you did the right thing....I'm sure you did what was right for you and DH, I hope he settles down soon, so you can find peace in your decision.
Placement has to be the hardest part of all this we are going through...It would be heart wrenching for any of us..
Just yesterday we were assessed for placement...Dh has gone from needing low care to high care, The assessor said he could go in placement now...I was quite taken aback with her comment....no, no, I don't think he's ready yet. As divvi said, IF he's physically healthy, still verbal, continent, and enjoyed watching tv, as my DH is, very confused at times, but no way ready yet. I was asked how much longer i could go on like this...ok it's hard and at times I could give in, but I would be doing him a great injustice at this point in time if i placed him......this is just my opinion on my situation.
I am wondering if one month is really enough time for him to adjust. Also, I'm wondering if there would be a larger ALF that would be closer to your home. First of all, with more than 24 residents perhaps he would be more likely to find someone to form a friendship with. Secondly, it would allow you to visit more frequently. If he is still somewhat "with it", he may feel abandoned with you visiting only once or twice a week. I don't see the issue as you placing him too soon; it sounds to me that this ALF may not be the best fit for the reasons stated above.
In my case the decision has been made for me. I can not afford to put him in a facility, I already feel like I have reached the breaking point for myself but have no choice but to keep him at home. I would have no income otherwise and I am in no condition pysically to work. I am sorry that it has become difficult for you to see him suffer for being there for the time being. I agree, though, it will get better especially since you said that he didn't want you to have to take care of him. For what it is worth I think you made the right decision for several reasons but for him it is better now instead of to late because he will have time to adjust before things get worse and he can't do anything for himself.
I think placement is such a personal decision. Just the other night, my dh told me he wasn't going to be here much longer...this really threw me for a loop because he never discusses his condition. Then he said..."You won't send me to one of those homes will you?" I told him the truth...and like I said, this is such a personal thing...I told him that I would keep him at home until I couldn't handle it any more. That if I had to move him around, put him in bed, help him shower, etc. I would have to place him becasue I am not strong enough to do that and I already know that...He said he understood.
The point I am trying to make, it isn't always something physical that a caregiver cannot do....but usually it is, and that is such an individual decision it is difficult for others to comment on when we don't know all the details. I hope you find peace with yourself...give it time. That is all I can say.
If your DH is 72, I am going to assume you are about 70--and you don't talk about your own health, but you sound worn out, you won't get any younger or any stronger, and he will only require more of you as time goes on. No, you did not place him too soon for YOUR well being--and that's something we CG's always put on the back burner. Really, placement, day care, etc is for respite for the CG, it makes no difference to the AD individual--the illness will progress no matter who is caregiving. The work that 24/7 CG's do at home w/AD is contrary to all government, union, legal and social working conditions. Who else is on call 24/7 with NEVER a day off, never a week-end, never a good night's sleep, doing the work that requires a full staff with someone else doing the laundry, shopping, cooking, etc? It is not unusual for someone to take 6 wks or so to adjust. I understand how heart-breaking your visits are, but you did save your own health--and that's worth as much as his. We can't control this disease--altho we've all tried. If your family is telling you placement is best, then it's true, they see things more objectively, I know from my own experience--I waited too long.
Betty..Great post. You said just the right thing and it was great advice. Most people wait too long and other family members can see what we don't always see.
If other people who know you and care about you are saying that it was time for placement, they think you have done everything you possibly could do to care for your husband. In no way does it help our spouses if we drop dead trying to take care of them. However, that sure doesn't help when your husband is so upset when you are there. Have you talked to the staff to see how he does during the time you are not there? If he is fairly content at other times, then he is doing all right most of the time. That probably does nothing to lessen your pain, but it might help to realize that he isn't feeling so sad all of the time.
I think for most caregivers, placement is one of the worst times in the whole caregiving journey. Not only do you have to see their pain, but you are doing your own grieving at the same time.
I realized some time ago that placement for us will probably come not because my husband has declined so much, but because I have. It's been nearly nine years since DH was diagnosed, and my own health is going downhill fast. It breaks my heart to think that he will have to leave his home while he is still somewhat aware. I know that when the time comes, I will feel like it's all my fault that he's having to go into full-time care. I'm working on realizing that it's not my fault, but the fault of this terrible disease. I don't think that helps at all with the pain, but it does remind me that I'm not in charge of or responsible for the progression of things. I used to worry all the time that I wasn't making all the right choices about everything. I finally realized that with some decisions, there are no really good options available.
Please don't beat yourself up over your decision. I believe your sentence about him tolerating it when you are not there but complaining mightily when you are, explains it. My husband did the same thing at first then settled in and now accepts where he lives. One month is not enough time for your DH to adjust, nor for you. My personal belief is that placement is mostly for the survival of the caregiver. Certainly it was in my case. Don't let anyone make you feel guilty for placing your spouse. No two cases are ever alike and this is certainly one topic where we should not judge nor should we try to compare circumstances.
Hiker girl, there is no wrong decision. Like others who have placed LO, give him and yourself some time. If you feel it's not working then make adjustments. Not only is this new for him, but also for you. You are doing a great job if no one has told you! There very fact that you are lamenting over this speaks of the great love you have for him. Take a deep breath .... You can do this. I am about to place my DH, he is 61 stage 7 and have been going back and forth with is it too soon.....it is heart wrenching. My DH is on a wait list (2). I have placed this God's hands and I am trying to live in the moment and just trust that I need to do what's best for him and myself. Know that I am thinking of you, and keeping you in my prayers!
Hiker girl...you did what was right for you. Don't go second guessing yourself...it is counterproductive. I believe that the caregiver, you, are just as important in the cargiving equation as is the affected. If you can't function then it all goes downhill and fast.
I have been where you are. I made the conscious decision that I was not going "down with the ship." I didn't cause my poor husband to contract the disease and I sure couldn't fix it....but, I could make sure that at least one of us made it to the other side.
I was tired of fighting with him to bathe, change clothes, take his meds, sit in a chair, lie in a bed, not pee in inappropriate places, quit putting used toilet tissue in my cabinets....I could go on and on. So, I found a wonderful small facility for him to live in....he was medicated properly and had more than one person to try to keep up with him. Was it pleasant, heck no. Not for me and not for him. I still believe that it was the best move for both of us. When he became bedridden I brought him back home and cared for him until the end.
Please let his doctor know about the crying...there may be a med change that would take the edge off and make both of you happier.
Anyone who has been through this knows what a gut wrenching disease it is and the decisions we have to make are heartbreaking.
I'm where you were Sandi. Hb continues all the behaviors he had at home same as your hb:) and is frustrating the staff and they ask me what I did to redirect him:) That's difficult to do w/him. I told them they advertise they're a memory care unit, they are understaffed, but it's their job to know how, what, when, where to manage residents. I wasn't "really" THAT direct, but implied and I believe it. I'm still his caregiver, but in a different sort of role. I'm not going to physically, mentally, and emotionally wear myself to a frazzle. Well, I did, but now I'm in recovery.
Thanks for all your thoughtful responses. The staff where my dh is living says he is adjusting ok when I am not there. I can be thankful that a lot of what I remember will be quickly forgotton by him.
For MarilynMD, I only wish I could place him closer. Nothing closer exists. When I drive to see him there is a stretch of 56 miles of freeway that has "no services" meaning, not even a gas station.
I am often envious of the day care and other services that large communities offer. I have to remind myself that my DH and I chose to live in this remote area because it is where we wanted to live. There are always unexpected consequences of each one of life's choices.
Hikergirl - I hope you have cell phone service and roadside emergency service insurance for those 56 miles without service. I have almost the same length of "no service" interstate when we travel to the doctor. I am so thankful for the cell phone. I can remember saying a prayer that I'd get home without incident those years before cell phones when trips to the doctor were frequent. Thankfully I always did.
Hikergirl, I didn't find it necessary to place my DW because an unmarried adult son moved back in with us and helped me for the last difficult year. Without his help, however, I don't think I could have managed to keep her home. But it seems to me that the obvious solution to YOUR quandary is to limit your visits if they upset him (and upset you) and try to begin creating a new "after" life for yourself. I know that may sound callous, but I gather that would probably be his wish for you, and I think you really need to accept and begin dealing with the fact that your dh is basically "gone" as far as any future for for the two of you is concerned.
I think placement, when it happens, is very individual. While my DH is able to dress himself, eat, put together a snack, is iffy with grooming but can use the loo without help and is not soiling himself or the bed or chairs etc. placement would not be for me UNLESS I had something regarding myself where I would not be able to care for him. I have no family locally. We each have to evaluate our own circumstances and try to make the best and safest decision for our LO.
I agree that creating a new life "after" is a good idea. However, the problem I see with limiting visits to less than once or twice a week is that Hikergirl would be trusting the facility to get everything right. My husband is in what I consider an above-average ALF, and yet, I have been "hands-on" and discovered overmedication (by accident) and called several minor medical issues to their attention to have the visiting NP check out. If I hadn't visited frequently, these things would have gone uncorrected. Institutional care is unlike care given at home and I am learning that I need to stay on top of everything. It was completely different when my Dad was in an ALF and NH--he could speak up for himself because his mind was clear.
I know someone who placed her husband in a different city, and she pays a family member to monitor her husband's care. Of course, that racks up additional expenses.
Thanks, Rosiek--this journey has been such an education for me. I have said all along that there should be a training course; anything I can share that makes someone else's journey less painful helps me too.
i ditto rosieuk marilyn. your posts are full of help from your living experiences. and they are many when we get to this point. yes, education- if thats part of it, then we all will have a PhD in 'educational experiences' divvi
So all my paper work has been turned in to NH and my DH will visiting for 3 days after Christmas. I will be on vacation until after New Years. This will be my first break in 9 years. What to do, how to act? So does anyone have advice in regards to what I tell DH about his stay, I doubt he will even understand what is happening.
The first time I had to move DH from an acute care hospital to a Care Facility, I told him that we needed to get his(spontaneous) fractured tail bone healed so that he would have no more pain and would learn to walk again. The second time I had to move him from a negligent care facility to one with 3X th number of nursing staff, I told him I wanted him to have better care so that the infections on his legs would heal. So whatever reason you can think of that will benefit him, try that. Even if you have to say, I need to have someone else take care of you for a short while until I get well again, feel better, stronger, whatever, so that I can continue to take care of you.
Rosieuk, mary gave good advice. just invent whatever you can for his benefit. i am soo happy to hear you are getting a much needed vacation! yay.. enjoy enjoy.. time to make up some of that loss fun. it will come back to you friend, just put AD out of your mind if possible and remember to relax.
Roseik--for my husband's first stay away from home (geripsych ward), I told him it was a hotel for him to stay in while I was going to a women's conference out of town. I said that way he would have company and someone to cook his meals. Then a nurse came to the lobby and offered him a wheelchair to go upstairs (must be a standard practice--he didn't need it) and I said "Wow, what a great hotel, they will even wheel you to your room!" I was very concerned about leaving him the first day, but he didn't protest. Wonderful that you're getting a break!