Yesterday I put my DH on the waiting list for the Alz facility in our community. I would like to ask you, friends, who have gone through this dredded decision, what worked and what didn't when you actually took them for placement? Did you tell your LO before you got there? What did you tell them? Did it work? What do you recommend? This board is such an important asset for us with an afflicted spouse. Thank you to all. Nancy I have just learned about an excellent book - "When Love Gets Tough, The Nursing Home Decision". It does not directly deal with Alz, but it covers all the areas.
Hello Nancy I placed my husband in Jan of this year. We told him he needed to go for observation and some tests. Blamed it all on the DR. When he asked to come home the first week or so we also said the Dr said no he needed to observe him more and get tests. Know that you are doing what is best for hi, they will give him the care that we can not always do at home. You will still be his primary caregiver and decision maker. Only now you will be rested and more able to care for him as well as yourself. thinking of you as you make these steps Kathy
Nansea-you are fortunate to have an AD facility in your area. Very secure ones are scarce in Florida. My husband was taken by social services directly to the facility. At that point he was so agitated he wouldn't have heard any explanation. He repeatedly "escaped" over walls and through fences until he was admitted to a psych unit again. From there he was directly transported to a different "secure" facility. He escaped three times through a double locked unit and while wearing a wander guard alarm. There was absolutely no way I could explain to him what was going on. After many medication adjustments and progression of the disease he settled in. My husband has FTD. After much research I found the need to educate the MD what drug regimen to try. AD meds like Aricept make FTD worse. Good luck. I have been told that by the time you are cosidering placement it is already too late. You are already worn out.
One of the advantages of a support group like this one is that people who's LO is nowhere near ready for placement can listen in. I'm not ready to go looking for a NH, but I am ready to be aware that at some point, I may need one.
I may be in the distinct minority in my view but I speak from my experience with my DH. When my family and I had to place my husband because of my health issues, we didn't tell him what we were going to do..just took him and then left when he was settled into the dementia unit. I was told not to visit until my husband could be adjusted to his new life. I stayed away as I wanted to do what was best for my love and thought the staff there were the professionals who knew best. We had problems ( behavior) from him almost immediately but later I found out some news that made me very angry and sad. I had to remove him from the NH because of gross negligence and over medication instead of environmental interventions. I insisted upon being given the nurse daily reports for the period my husband was in that NH. Documented was the first nights in the unit. 'The first night and following nights, my dear one thought we had abandoned him and he kept going from locked door to door crying, " w he re are you? I want to die!! He was very distraught. He sasid, I want to kill myself. This haunts me that he was so frightened and could think we had abandoned him to st rangers.
So when we plac ed him in the following NH, I talked to him before we took him telling him he was going t o a hospital to get help and that I would see him often. Then the first week I practically lived in the home just being with him He was able to "adjusT" much better with me helping him. I believe that our LO is much more aware of their surroundings than they can convey and with their loss of memory life be comes a frightening existence. They can still connect somewhat emotionally so I have tried to give as much refuge and love that I can enfold my husband in.
I think that I will always be remorseful that I out of ignorance allowed my husband to believe we had left him with strangers to be all alone. I know this experience of mine may not occur with you and your DH/W but I wish it had been different for us.
Thank you for sharing such painful memories with us. I also am no where near needing to look for a NH but the experiences of others can help guide me when I need to make those awful decisions. My DH has become very docile and and child like . From the beginning he never wanted to learn anything about AD and rarely ever talked about his diagnosis. He has this basic acceptance that I will care for him always. When we arranged things with the attorney , obviously we planned for eventual NH placement. When ever he hears the words NH he reacts, and will instantly tell me he doesn't want me to send him there. I really believe that though he will lose many of cognitive abilites, he will retain his fear of nursing homes and being sent away. I am sorry that your first placement was so awful for both you and your husband. But you did the very best you could and in the best interest of your husband. That's all any of us can do. By sharing your experience you have helped others and you have made a difference.
carewife, thank you for telling us about what happened to your husband at the first NH. Now I know that if the people at one of these facilities tells me to stay away to beware.
Many years ago I knew a woman who had to place one of her children in a home because of both physical and mental problems. She told me that she made it a practice to show up unexpectedly, without any kind of pattern, to see her daughter. That made it easy to see what a normal day would be for the child. That was in the days when children got diseases that required them to be placed in residential hospitals for care. It isn't that normal anymore, but I will always keep in mind what she said and what you said.
The only way to know that your loved one is being cared for is to be around and to show up, at least occasionaly, out of pattern. I'll remember.
I show up at my husband's facility at all hours and days. Learn a lot that way. Also-the full staff knows I am watching. New owners just took over and I am requesting a family counsel be formed so that our concerns can be better addressed. Just because your LO is no longer at home doesn't mean that you are no longer involved. Now that I am not so stressed I find I can be more objective.
carewife - what a sad story. Thank you for sharing so we can all be aware. I DREAD coming to the day when we have to consider a NH. So many times I wish for my DH to die before we get to that place. I do have a couple of options in mind, but it feels horrible to need either one...
I placed my husband in December. I told him I could no longer care for him and he would have a new home. He seem to know what I was saying and did fine the first few days. He would get angry when I left for a few days, but settled in. But because of personnel problems, I had to move him to a larger home. This did not work out AT ALL. It was very hard to move him again, but he now is in a smaller home and is doing very well. I don't know what would have happened if I had not been involved with his care. He now has his "angels" taking care of him. Finally we got it right. It was a difficult time for both of us, but so happy things are working out for him now. I grieve for him daily, and wish I had him home, but he can no longer walk and is incontienent. My advise is to keep a high profile at the home and dont be afraid to object to what is going on. Keep in touch and visit as much as possible. Darlene
I am not at that point of a NH decision, so it is hard to give advice about a situation I have not faced, but I would tend to agree with Carewife. If it were me, I would try to find a place that would allow me to be there and help with the transistion. I know they adjust eventually anyway, but I would not want to put my husband through the fear and stress of feeling abandoned.
Thanks to everyone, My DH is quite alert at times, was a lawyer for 35 years, and was always telling people about our decision to buy LTC insurance in 1991 after he had some back surgery. I always hear that the homes suggest that you don't visit for a couple weeks, but I think that would kill him. Carewife, I think your lessons learned are extremely valuable to all of us. Your experience at the second facility reinforces my thinking about the way it could be handled. I know that when I leave him with a caregiver now for a few hours, he constantly asks where I am. I just hope the tears don't damage my keyboard!! Nansea
By the way, We were sitting watching 60 minutes and he turned to me and asked, “Is there any reason why we can pack up and go back home in the morning?” I said, yes, I guess we can!! I’m not sure of which home he thinks we would go to, since we have been here in this home since 2000. You always wonder what they will say, when they open their mouth.
Carewife, thank you so much for sharing. It helps me know what to watch out for. I can't imagine as yet what it will be like to put my husband in a NH. You, Bluedaze, Northstar and Darlene and others who have written are a help to us. Thanks again.
Nancy, it is amazing how the AD mind works! Or not!
I placed my LO in January. She had not been there (to the facility) before. We walked in, and I sat with her on the couches and in her bedroom. I had come earlier and put her furniture (one dresser) and her memory stuff in the room. I sat on the bed, and talked about the stuff on her dresser. I acted very nonchalant and casual.
I left her watching TV, just before lunch. I just got up and left, with no fanfare. I've never left a child in daycare, but I'm pretty sure it must be close to that hard.
I didn't visit for a few days, but called to see how she was every day. She did fine. They said she asked to go home, but she asked that of me when we were home!
The only problem I had was once, about two weeks later. I had come to visit (it was the 4th or 5th visit since), and we were on the couch. We were making the little AD small talk, and all of a sudden she has one of those lucid moments that we all experience with an AD patient. You know, where they are just as clear as day, just for a moment or two. She turned to me, and stared at me, and said (quite coldly), "Well, you did it, didn't you. You did this to me. I can't believe you would do this to me."
It hurt. It hurt bad. I acted like I wasn't sure what she was talking about, and it didn't matter, she was gone again, and back to AD land. But that hit me like a knife. It never happened again, and I never got any feeling she knew where she was after that day. I 99% don't regret placing her. But I'll never forget that one horrible moment.
ATTENTION EVERYONE - In order to avoid repeitition of topics, I have moved all of the comments in "When to place in ALF?" to this one, as they are basically the same.
Comment Author Nell CommentTime 21 hours ago edit delete
My husband of 40 years is in stage 5 of AD. He does still know me and our children, and I believe he has moments of lucidity-he says he loves me, tells me I'm doing a good job, etc. However, increasingly, he goes to his "crazy place", my words for when he's angry, unco=operative, pacing, all those behaviors many have experienced. I have just started Seroquel in the morning and it seems to help calm him down. The bottom line question is - when do I place him? When he's in his "crazy place" it would be easier to do. I'm afraid of those moments when he's not in that place and he's (maybe) lonely, unhappy, etc. I would love to hear some experiences of those who have placed their hubby. I think it's gonna be the hardest thing I'll ever do!!! How do I get thru this?
Comment Author bluedaze CommentTime 19 hours ago edit delete
Nell-I placed my husband of 48 years when safely became a huge issue. I had to keep my car keys hidden at all times (sometimes I forgot where). He wandered our streets with a knife to protect himself. The police were called when a neighbor over reacted-we have a lot of educating to do-don't we. I was worn out because he didn't sleep. The placement did not go well and he escaped too many times. Now-a year later he doesn't know who I am. A sad disease. Once you decide in your heart that the time is right-DO IT. He may have a good day and you feel you can handle it-not so.
Comment Author trisinger CommentTime 7 hours ago edit delete
Although...and this is hard to say...sometimes your heart is not the best to follow. Everyone but me knew it was time to place my DW. My heart told me to hang on, to try harder. I hid the difficulties I was having, I lied about how much trouble she was for me to keep up with. I didn't share with anyone ANYTHING about my life. I kept saying I could do it. I told myself I was the best thing for us, for her, for me. I knew I would do it at some time, but of course the time was not now. I was sure I would know when it was time. And I kept on caregiving, and kept up a happy face, and hid our true lives.
I got sick. I'll never say it was from the stress, because I don't want to sound like I am blaming her, but I ended up in the hospital. When my LO was taken care of by others, the true extent became known. I didn't fight them when she was placed. In truth, it was almost a relief to have her placed, and I didn't actually have do it. The hospital even told me that I would be released only on condition that I didn't go back to caregiving fulltime.
I guess my point is that sometimes the signs for placement are there, but you don't want to see them. Both of us are better off now, in many ways. I am sad, and I miss her, but I look back and see what I was trying to do was impossible.
If you are hiding aspects of care from other members of your family, it may be time. If you feel that you can't do it, but no one else can either, it may be time. If you wonder whether it is time, then it is time to at least look into your options. I feel for you, because I know what is is to be told that it might be time, but to fight it and not want to listen.
How about this: decide that it is not time for placement, but commit to looking into the facilities. Tell yourself that you are looking for the FUTURE, not for this week. I would have been better off if I had done that.
Comment Author Laurie CommentTime 2 hours ago edit delete
trisinger Your post makes a lot of sense to me and gives many of us alot to think about. I am no where near needing to place my husband and yet I have already recognized that I have minimized several behaviors and incidents from our family and friends in an effort to maintain my husbands privacy and dignity. I couldn't bear to have all the details of our lives talked about.
A year or two ago I was always thinking only in terms of me doing everything, but this site and the wisdom of others has finally helped me see that what I wanted isn't possible. Only now am I beginning to reach out. And I mean in very small ways .
Reading these posts reminds me of the day I went to the nearest Alz.facility to ask if there was a caregiver support group available. The answer was, "Yes, for the families of our residents". I didn't go there to discuss anything else but the lady asked me if I was a caregiver. I said yes, BUT my husband was not anywhere NEAR a consideration of placement. She said, well maybe you'd be interested in having him EVALUATED and sometimes its even better if they are placed earlier rather than later. They have four levels of care, beginning with level ONE. I was nearly ready to throw up by that time and tried to politely take the brochure she handed me and just get out of there as fast as I could. I threw the brochure over the back seat and drove the 45 minutes home with a huge feeling of denial and a certain amount frustration with the whole effort to find face to face support in our rural area.
With all of that said, there are TIMES, and we all know them, when things are tough and we are so exasperated, that I dug out the brochure and really looked at what Level ONE means. It was a hard truth to face.. If I wasn't here to manage things, I believe he would qualify. Whether or not he 'qualifies', until some other time, we'll keep things just as they are.
When is it time for placement in a faciilty? "When the caregiver is no longer able or willing to provide the level of care required. It is about the caregiver, not the LO's condition. " This is a quote from Norbert on the ProHealth's Alz Message Board. I try to keep it in mind as I struggle with this decision. Nancy
I too am struggling with the decision to place or "give up " my husband. I'm doing this on my own as I have no family. Husband's family live across coutry and in Europe.If I had help, I could probably last another year or so but having only a few hours of respite just isn't enough I need weeks. His daughter wants him to come live with her. She lives in northern Alberta, quite isolated. I know it would be good for him as they have animals and go for long walks in the country. She and her husband are semi retired and in their 40s. However due to the location I would see him very little. Also if I see him only once or twice a year it may be too upsetting for both of us. Of course DH would not understand so we can't discuss. Its beyond his present level of undrstanding. He can still look after his own bathing, grooming etc.Hes stage5/6 I think. His sons agree that he should be with their sister. One son visited with us this winter and agreed that it was more than I can handle. The other alternative is that we both go into assisted living and then I move on when he need more care than I can provide and he goes into LTC. Of course we also have the anger issue which is really difficult for me.
There are some additional things you might want to think about. When your husband goes to his daughter, how long will he really be able to be there? Any move can be very traumatic to a person with AD. What happens when or if they can no longer care for him in their home. Do they really understand the level of care necessary for a person with AD? My step-son and his wife made the same offer to me. It would have meant my husband moving 1/2 across the country and me literally dropping out of his life. As my husband was (and still is) very attached to me, I did not think that it was a good choice for him to allow that.
When I was researching facilities, the best advice I got on when to place a loved one was to do it while there was still enough of them left that they could get used to the new place. I waited too long to place him in terms of how I was being affected, but did place him at the right time for him in the disease. He did very well adjusting to the new place.
Therrja, thank you and everyone so much for such helpful information. It sounds like you heard very much the same information I did. I just couldn't grasp the reasoning of placing them when they are getting along relatively well...
However, my husband is becoming more and more dependent on me as well. My question is, in what way do you think you waited too long to place him for your own well being? There are times, just like right now, when my husband is so frustrated at not being able to drive and do what he pleases..that if he was in an ALF he might be able to participate in activities and find more enjoyment there than here.
I don't feel like I'm an adequate 'activities director'. I can suggest things but he's not interested...At the same time. I have no idea..just like so many others, how I would be able to actually carry out placing him..
The concept of having him admitted for 'test's at some point is the only thing I've seen so far that might 'work'. It feels like betrayal..even though he has expressed a desire to be placed if a time came when he was violent. He hasn't been violent..yet. He's been threatening..but not actively violent. Anyway, I'd like to know at what point for your own sake, you should have placed your DH. And then, at what point it was better for HIM..
Judy-the placement issue is a terrible one. It is a betrayal. The social worker and I tried to convince my husband to enter a facility on a trial basis and so he could "instruct the staff in CPR" (he had been an instructor just a year before). He would have no part of it. Within months he went over the edge and was admitted to an ALF from a psych unit. My feeling is that as long as he protests you can't really do it. In Florida you can't place a person against his will=no matter how far gone he is. You can get legal guardianship but that is a long, difficult and expensive process. Who said life was easy.
bluedaze, getting guardianship, at least in California, does not have to be a "long, difficult and expensive process" if you do it relatively early on, when your spouse is still capable of expressing his/her wishes ... provided, of course, that your spouse cooperates. I've just gone through the process here. I explained to my husband that I was very worried that someone else -- one of his kids (rotten little blank blank blanks), for example -- might try to get legal authority to "care" for him, and I wanted to be sure that I was the one with the courts behind me. He was quite agreeable.
I don't think he fully understood that it meant I had the power to "place" him against his will. It was interesting that his attorney (the AD patient has to have his own, to ensure that his wishes are followed) and the judge were so careful in the way that they worded their questions to him, that if I hadn't known what they meant, I would not have understood their questions. I think my husband felt they were talking about giving him medicine, working with his doctors to decide what treatments to use for his skin cancer, things like that.
I hope, from the bottom of my heart, that I never have to use the power this has given me.
Ok I have been instructed by the doctors this week that I really need to consider placing my hubby soon....and I need to go look at some places and also get in touch with an attorney to declare him incompetent (he is wanting to buy a car so he can drive to work). My husband still recognizes me and his family and is starting to fall (has not hit his head thankGod) he has been walking out the front door ...wanting to wander which he has never done before. When i went to look at the facilities....I am just so unsure about this and when is it time? is it when he forgets me, or when he becomes violent. The doctor said it is not if I can take care him .....I won't be able to ..this was very hard to hear since I have been doing everything to keep him comfortable at home with home health aides coming in...I even took the certified home health aide course recently and passed! Please Help. He is now on aricept,namenda,seroquel,keppra xr,clonopin,synthroid,cerefolin,
Angel, if the doctor said you need to consider placing him, then the time is probably here to do so. You will need to get guardianship over your husband to place him without his permission (most won't take a DPOA).
If he is falling and can't get up, that is the time. If he is violent, that is the time.
Forgetting you is something you can learn to deal with emotionally, and putting key only dead bolt locks on all exterior doors that open with one key and you keep that key on your person at all times will prevent their roaming and wandering. I've had them for a couple of years and it has allowed me to keep my husband home, as he is not violent.
My husband is beginning to have his legs not support him, so he may have to be placed in a hospital bed in my home soon, as Hospice takes care of him.
Consider it homework to check out the recommended facilities in your area, so that you'll have an idea of what you want and what's available when the time comes. Start guardianship procedures now. It takes time, at least it did for me; if I remember correctly, it was about 3 months. (I think that Divvi would recommend going to an elder attorney.) The time will come when you will need to move your husband into a care facility, and you will have everything in order to make the transition as smoothly as possible for both of you. The fact that your doctor is recommending it is not a reflection on your care but of his experienced view of your husband's condition and prognosis. You're lucky to have this doctor. Many have had to battle with doctors in order to get them to take them seriously.
My husband has been in placement almost a year. I told him a couple of days before hand that he needed to go to a new home because I could not keep him safe (he fell), clean(he was incontinent and afraid of the shower) and stay up with him 24/7. He slept very little. I took a week off from work and spent a lot of time with him. He adjusted well. I still go 5 times a week, taking only a couple of evenings a week for myself. I work full time, so I can't change my schedule much but I am confident that he is well taken care of and I am involved in every level of his care.
Our experience with my DW placement has really been good. Look at my latest post "CAROL HAS NEW FRIENDS. This is telling about the real good experience for the last 4 months at the Christian Care center. In our case a NH has been much better than we expected. love bill
Found my checklist and the website for help in evaluating both day care and long term placement locations.
It is AGIS.com. Has many helpful forms for evaluating and for resources.
Good luck to all having to make these decisions. I know I am supposed to be visiting various places so that we are prepared if necessary or looking for future inhome help.
Another website that is helpful, believe it or not, is Medicare.gov jus click on long term care, or nursing homes, and you can get the rating of homes at a certain distance from your home. i started with 10miles, and moved up to 25 in my research. I have visited 3 places, today was the VA facility at montrose, NY. The nice thig about them is there are mostly men there, as opposed to a regular nursing home that will have mostly woman. i was very impressed with this place but the website above was very helpful over all.
Anyone know what happens to proceeds of a large life insurance policy (term only..no cash vaue) if my husband passes in a nursing home? Do the Medecaid folks take it as back payment? Is the beneficiary need to change to them?
I am completely at a loss as how the actual placement should go as it just seems like burning in hell to me. I am alone in NM, no friends or family. During placement at ALF, I brought him there, then had to leave. In reality, it would have been easier to just lay down and die. It was HORRIBLE. I like the idea of blaming it on the Dr, but how can I do the transfer...I just can't see myself dropping him off again. I am going to ask the doc if we can get him hospitilized for a day or two, and have them transfer from there. Don't know if they will go for it. All ideas appreciated sheltifan
sheltifan2, I don't know what state you live in or if it's any different. Our doctor put DH in the hospital for three days. After three day Medicare will just have them moved to a nursing home. That's where fiblets came in for me. I told DH that the doctor had seen something on his blood work that he wanted check out in the hospital. I only paid for ambulance transportation from hospital to nursing home.
When deciding where to place your spouse, please visit at different times of the day, unexpected. I have really had my eyes opened in the last month or so, I was always visiting through the day around lunch time, no problems, recently, I have been going around 4:30 & staying through the dinner hour to feed my husband. You would be surprised at the times I can find no aides to open my husband's room. There are 18-19 residents with really no supervision. Today, he was wet through his pants & shirt...that told me he had not been toileted for some time. They are suppose to take him every 2 hours.