I just found out that the ALF that we want for my DH has a room available and I’m faced with the decision whether to place him now or wait for another few months. He is 68 yrs old and in stage 6 and, while still continent, is experiencing sundowning, delusions, hallucinations and some paranoia. He won’t change his clothes and will only agree to shower about once a week. He needs assistance with showering and meals, but toilets himself. He’s been a flight risk for a year and because spring may finally be returning to Mpls, I’m afraid he’s going to try to take off again. We’ve been ‘released’ from daycare because he tried to choke a guy whose only fault was to try to keep my DH inside the building. We have him now on Haldol twice a day, which is working to keep him calm, but he has nothing to do all day. His Dr. told us last week that at this point he would really benefit from a full-time structured environment (i.e. placement). When the caregiver is here, he now spends most of his time in his room; in fact he spends most of each day in his room when I’m around too. I don’t argue with the man, I just walk around trying to stay out of his way and keep him calm. He used to go to bed about 8:30pm but within the last couple of months is up and down, some nights until midnight.
He rarely knows me as his wife, but seems to miss ‘her’. I feel like the bossy *@&%$ who tells him what to do all day.
The biggest issue in my mind is that he does not have any quality of life here. He is not comfortable anywhere but in his room, and when not in his room, he just wanders around the house. He does not watch TV or play games, read, do chores around the house, or garden. We cannot get him into another daycare because of the issue last week, and our insurance won’t allow us to put him into an in-patient program for meds adjustment (to assure his return to daycare) until we do some more out-patient meds adjustment. I feel like I’m stuck until he takes another turn for the worse and I don’t want to wait to place him in a crisis.
I wonder if I’m rationalizing placing him now because I’m so exhausted from this journey, or if I should wait until he is so totally inside his head that he is not aware of any move.
My head is spinning. I need advice from you wise ones!
Fiona sounds like you have answered your own questions. if hes needing a more structured environment for a better socialization and you are having issues with his hygiene etc, then sounds like its the right time and decision. your dr has already given his input as well. sometimes we see here they do much better while they are able to adjust rather than in crisis mode. maybe he would benefit from socials gatherings and around others like himself. hard choices, I wish you the best, in whatever you decide. divvi
My feeling is that it is better to place them while they have some idea of what is going on. A more structured environment helps a lot. Even if they are just in the day room with the TV on they have other residents to watch. Sometimes what would almost make me chuckle was to see two of them have a jabbering conversation and seem to understand each other.
It's better too soon than too late. The deciding factor, I think, is that you can have the room now. If you wait until you're convinced he has to be placed right away, you may find that a room there is no longer available. It is surprising how quickly they do adjust - it's much harder on you than on them. Best of luck.
Thanks for your advice. I've talked myself into and back out of this monumental decision a couple of times today but I come right back to the fact that it's time. I just wanted some confirmation that this isn't a selfish wish to have a little of my life back again.
Fiona, it is such a heartbreaking, gut-wrenching decision. My Lynn would also hole up in his room for most of the daytime hours. Even with medication he had horrible sundowning. (he was also physically abusive) He was also up through most of the night. Even though I shut off circuit breakers to prevent fire, nailed the bedroom windows closed to prevent wandering etc., I still had to be on high alert and keep an eye on him. I rarely got a good nights sleep. To this day, 4 years after placement, I still can not go to bed until the wee hours of morning.
I would say for us there have been some great benefits to placement. Not just the standard he is SAFE and you can get some much needed relief and rest. Lynn was never a huge socializer, but having the structured environment greatly improved his quality of life. At home he was in a basic vegetative state of mind, when he wasn't sundowning he was either sleeping most of the day or staring blankly at the tv. I too wanted a better quality of life for him!
Truly he has a better social life than I do. There is activities all day long he could attend. In the afternoon they have the major event for the day. It could be something as simple as bingo or bowling (which he cannot participate in, but does enjoy watching and listening to the people) To something as grand as a live music show. He simply LOVES these and there are at least two a week, often more. He come so alive at these. Grinning from ear to ear and exclaiming loudly "I love this!"
Truly, what more could we want for our loved ones?
Aside from the stimulation, he gets restorative therapy and physical therapy daily, as well as a diet specialized to his needs. These are things I could not provide for him at home. The desire was there, but he would not let me help him. (And I couldn't afford to hire live entertainment every day of the week either :)
The other major benefit for us was that once Lynn was placed I went from being the witch who tried to force him to do things, to once again being the wife he loved and cherished. I did not expect that change and I am here to tell you it has made such a difference to my broken heart.
I no longer have to play doctor, nurse, nutritionist, bather, etc. etc. I am simply his wife and his best friend again. What a gift that has been! Instead of being just completely consumed in depression and stressed to the absolute max, now our time together is cherished time I treasure. I am able to put all of my energy and focus to making him as happy as possible, to bring as much joy to his life as I possibly can.
I will not lie and tell you placing him was easy. It was the single hardest thing I have ever had to do. It damn near completely broke me. But, once the pain of separation lessoned, I was able to clearly see that it was the right thing to do, for both of us.
What we do in love can never be wrong. It is such a personal choice, know that we are here to help and support you, whatever you decide ((Hugs))
You husband sounds much worse than my wife and I am planning on placing her in September. You don't provide any reasons for keeping him home and state that he may do better at an ALF. I know people who wish they placed their spouses into ALF a year earlier than they did because they saw that it was a better place for their spouse and that their spouse improved.
Also, the longer you wait the harder it will be for him to adjust to the change to an ALF. I want to place my wife before many of the behaviors you mention surface, I think she is very close to going down the cliff. Her psychiatrist and neurologist have both suggested ALF to me.
I've started looking at ALFs and see how the good ones provide a more structured life than she has at home (I hire caregivers for when I am not home, I still work). I do need to wait for progression to advance farther with my wife, she is too self-aware to be moved now, but I suspect she will be worse in September. But even then I expect her to be more capable than your husband.
Her neurologist talks about how our relationship will improve once L moves to ALF and I don't have to deal with her day-to-day care. Also, our teenage son is feeling more stress as her conditions worsens.
And if you are feeling exhausted, how much longer do you think you can care for him at home. If you have a major health problem you probably will not be able to care for him at that point. So think of the rules for airplane oxygen, the parent puts in on themselves first and then the child.
I agree with Mary and the others. And there is never a time when it feels right or ok to do I think - so you're always going to feel like this.
I couldn't bear to put my wife in while she understood what was going on around her. I was never going to hear her ask to come home and have to say no.
As a result I burned out (or so I'm told). And now even though my wife can only stare off into space, I still have serious reactions to going to see her after almost a year and a half.
I wouldn't know what winning here looks like and don't believe there is such a state. So anything I did here felt like losing, being a loser, horror in being forced to face such a truth when all my efforts are to ignore those truths and keep going.
You do not need to rationalize. There is no information you are missing. This is coming so it's just when you do it. And you're never going to feel right by it.
I'll say something more about what no one talks about. If I had had it somewhere I would have placed her then. It's no one else's business what life decisions I make in this hopelessness - it's just my business.
I'm sorry. I wish I had a better answer than to throw cold water.
Fiona: From what you have posted, it sounds like now is the time. And it seems to me that you know this to be true. You have made the best argument that it is possible to make for doing this at this time. And, no one knows the situation like you do.
Nikki, the ALF I've settled on has great people and programs so I'm expecting the same scenario for my DH as you and Lynn have experienced - except for the awful transition part :) Paul, this is such a scary responsibility. I hope for you and your son's sake that you find a great place and things go well for your family. Wolf, that was the perfect answer. Dean, thank you for your kind words and support.
Well, we will know on Tuesday (after they meet with him for an evaluation) whether they will accept him into their community now or if we will need a Geri-psych stay before he can be placed.
Again, thank you all for your support. I'll keep you updated.
Fiona: With your permission, just one more thought. I think you have done absolutely all you can for your dear husband. At some point, you can do no more.
Yes I echo dean above. You can only do so much. Fiona, it literally almost killed me by waiting just a couple of months too long. If I had been able to do it just a bit earlier, it would have actually been easier. By waiting until a major crisis, (his hospitalization and my pneumonia), I had to not only struggle with the agonizing decision, but also fight to get well. (I NEVER get sick, NEVER used to)
I wish you all the strength to get through this, and if you have a good place in mind, it will go well.
Fiona, wanted to ask how long you had to wait?? I am on a wait list for my husband since February. I am waiting for a Medicaid bed so I know it will take longer. I wanted to get him on a list. I figure by the time a bed opens, he will need it or at least that is my line of thinking. He can still toilet himself and needs help bathing and dressing. He does not wander and so far does not have any hallucinations or paranoid symptoms. I too think placement will be a better so I can stop being the bitchy wife and start being a kinder more loving person towards him.
CO2, I've been wondering how your search was going. I had him on waiting lists for 2 months because i thought I'd need a space by summer sometime. However, his behavior changes pushed up that timetable. We have long term insurance so we don't need to work through Medicaid. I hope you find a space for your DH soon. I too am hoping to have some sort of quality relationship with him once more and for as long as possible.
CO2, I believe that Medicaid will only pay for NH and not for ALF.
One ALF I am considering doesn't even have a waiting list. They have 2 beds open right now and they told me they will probably have rooms in September.
I suspect there are many variables for length of waiting lists. My wife's shrink, who works a few days a week in NHs, told me I might have to wait a year on a list.
I didn't place my husband until I fractured my neck, pulling him up from the bed. The doctor told me I had him at home longer than most people would. He said we all wait too long. I know it was so hard to let go. When I took him, I told him it was a Hotel for people that couldn't be a lone. He accepted it. with no problem. We always referred to it as the hotel. I went every day. When I left I said I was going to the store. If he wanted to come, I said I would be right back. He didn't really know me either. He knew I was someone, but not who. Once I was gone he never missed me. He was very content there. I hope you find your way.
Fiona68--I can relate to your situation because my Steve was 66 when I placed him almost 2 years ago, and was in Stage 6. He was (and still is) fully ambulatory and on psych drugs to control behaviors. The main difference between our situations is that he had a 5-week stay in a geripsych unit prior to the move, when it became clear to me that he didn't know where he was. That made the decision much easier for me.
Regarding the insurance issue you mentioned, he is covered under traditional Medicare and the secondary insurance is Blue Cross. There was absolutely no difficulty with coverage of the geripsych unit stay (of course, we had already been doing at-home medication adjustments for about 6 years before the admissions).
Bottom line, Steve adjusted beautifullly to the ALF and it has several advantages over our home. First of all, plenty of room to pace. Second, continual socialization and appropriate activities. Even though he's now in Stage 7, he continues to attend the activities when the mood strikes. He was never a flight risk, but the security at the ALF is excellent and would eliminate that problem if it existed. And finally, a big advantage is that the psychiatrist visits the ALF several times a week and can observe him and tweak the meds, if necessary. Much easier to do that way than when he was at home, where the burden was on me to evaluate and describe what was going on for his neuro.
I think your husband's doctor's advice is right on the money--a structured environment really works well for dementia patients. Good luck.
Thanks to all of you for the advice. After this weekend, when he absolutely refused to take off any of the clothes he's now worn for 4 days (much less shower or shave), did not have an appetite for anything much, stayed in his room a LOT, and was very confused when he was with me, I am very comfortable that now is the time. In face, if placement was not already in process, I'd be in a state of high anxiety at his current state, as this is way past the line i'd drawn in the sand.
My gauge was always if he's happy at home, then I'm still committed to doing this. However, he's not happy anymore, he is sad and confused. This lovely ALF will do a much better job than can be done at home in keeping him comfortable and engaged appropriately.
Now: WHAT TO SAY TO HIM? I'd really like to know what you told them - those of you who brought your DH's directly from home to placement. This is the only piece I don't have resolved - and, of course, it's the scariest for me. Thanks!
Fiona, When I placed Jerry he was about at the stage your dh is at and 3 doctors and the police (yes! he wandered and after helicopters and bloodhounds) suggested that placement or 24/7 watching was necessary. I work so that was out of the question. After much soul-searching and a discussion with the ALF, I simply packed his things without his knowledge and off we went "for a ride". (Being of Italian extraction this made me laugh and cry at the same time). But, I told him nothing. I just said we were going to visit some friends and brought him to the ALF. When we got there they distracted him, took over and I left, feeling quite crazy and guilty. However, I knew that if he saw me leaving he would want to follow me and I had to give him time to adjust. The only mistake I made in the beginning was visiting too often. Every time I came he wanted to come home with me. When I wasn't there he would ask for me but not ask to go home. Sometimes he would ask for me 5 minutes after I left. So for me, the bottom line is that I don't think you CAN tell them anything that they will process correctly. So just handle it the best way it works for you and the facility. I also think in the beginning it's best not to visit too often as it gives them a chance to adjust and some respite for you. This disease is impossible to feel good around. Don't try to reason with it. I hope this is helpful.
Thanks. I fully understand the impossibility of being 'on them' 24/7 and am looking forward with much relief the end of this full time caregiver phase.
I'm not sure if it's the Haldol he recently started taking or if we are in another decline, but he is very confused, irritated, loggy and not fun to be around.
Fiona, the best advice I can give you is not to tell him anything too soon and to make sure you speak with his doctor before admission to make sure you have an increase in his medications available if needed. I really don't have the heart right now to rehash that day, or the weeks that followed (sorry!) but here is the link that I shared some of it on..... http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=1202&page=2
There was another thread from that period of time, but I can't find it. Then I went AWOL for awhile while I licked my wounds.
Go with your gut, use whatever fiblet or truth you think would work best for your DH. Three things are certain: It will almost break you... But you WILL survive ((hugs)) And in time, he will adjust. Eventually they all do.
Thanks Nikki. I love that you sent the link. I'll read it tonight. I've read a lot of the old threads, and have learned from all. The overwhelming consensus seems to echo your advice.
Fiona--Haldol is one of the older antipsychotics and I don't think it's the drug of choice for dementia behaviors. Do you know why the doctor prescribed this vs. some of the newer drugs--i.e. Seroquel, Zyprexa, etc.? Perhaps your husband already took those and they didn't work for him? Haldol has more extreme side effects when given to a dementia patient than those I mentioned--based on what I've read, if you're seeing a decline, it's probably due to the medication vs. disease progression.
Marilynmd, if I am remembering correctly, he said that Seraquel would not work as well on his sundowning behaviors, which is when he was getting riled up to the point of being almost combative. I hate this guessing game with the meds. As horrible as placing him in ALF is going to be, I'm hoping the staff will be able to help me find the correct balance. The Dr. said we might consider taking him over to the ALF without the Haldol and see if the controlled environment is all he needs to stay in a calm state. Sounds a bit risky to me but I'm going to discuss with the staff there tomorrow. I've still got some ativan if needed!
Hopefully this all won't hit me until AFTER the move is completed. At least I've got a fully stocked wine rack!
Fiona: My DW was on Seroquel and when it quit working, the dr sent her to a psych hospital. She was there for two weeks and they changed her meds to Zyprexia. Worked wonders and she was still on it 3 yrs later when she passed away. That two week hospital stay was one of the best things that ever happened for us.
Thanks Dean. I'm hoping that we'll have that same success. He just won't do anything now - everything is a battle, at which point I back off. Saturday's placement cannot come too soon for me. I'm certain I'll go through all the pain of loss when I am back in our home, but we have to get him in a more stabilized environment. He's just so unhappy - a more than a little scary at times.
Fiona, I have been waiting since February for a room. He qualifies for a locked dementia unit and here in the Cleveland area they have a program called PACE where if I place him in a facility that they have a contract with, they will handle the Medicaid application in 4-6 weeks where normally it takes 3 months. They do have Medicaid beds but I have to wait until one is available, which may take some time. He technically has to be a resident of Cuyahoga county which means I must get him placed first and then apply for Medicaid. This is a new program and I am not sure many other states have it. He is beginning stage 6 as far as I can tell. I am still taking him to the local senior center each day where he eats lunch and does a little socializing. So far it is working. I am seeing the doc the end of the month and it will be interesting to see what she has to say. Yesterday he had an "accident" in his pants (first time for fecal incontinence) but he hates wearing Depends. He is quiet, does not wander, and so far is not difficult to control. He has trouble getting his thoughts out and has major word finding difficulties, is having toileting issues, needs help showering and bathing and cannot make any food.
I noticed that several people are discussing Medicaid in an assisted living facility. I think that is great because, here none of the alf's take Medicaid. They are all private pay at about $4,000 to $5,000 per month.
CO2 mentioned placement with the facility helping with the Medicaid application. I did that last December when I moved my DW from an ALF to a nursing home, but Medicaid turned my application down and I had to pay the facility their regular rate from day 1.
I wish there was something I could do to help you ladies, but::::::::I sometimes tell people that I made a lot of mistakes, but, I did the best I could.
I went to the ALF today to sign papers and then found out he would need a chest X-ray or the Manitou (TB) test before we can place him. So my detailed schedule of family moving his things while I take him out for a while and then straight to the ALF may have gone all to hell. I am also suffering with the anticipated remorse, second guessing, & doubts that I'm doing the right thing, etc. I had to read through all these threads again to keep me on track, so thanks again! I'm calling Insurance tomorrow morning to see if they can recommend a home nurse agency that will come to our home to give him the TB test cause he refuses to cooperate in leaving the house lately and I think a visit to the Dr's office and a chest X-ray will be more than he can handle. Of course, chances that I can get this done in time for placement this Saturday are looking pretty slim.
By the way, after a week on Haloperidol, our caregiver and I believe that his behaviors are worse. I don't think I'm giving him any more of that.
CO2, it's nice that your DH will still go to a day program. I wish you luck in finding a good place for him.
Fiona68, I hope someone recognizes your plight and helps you get the TB test. Call the Dr's office and beg their help - if you can get him in the car maybe they could come out to the parking lot and do the skin test without him having to leave the car. Or, if you have to get the X-ray, perhaps choose a small clinic site, stop by first and get everyone there on board, do all of the registering, and then when you bring him in, they can immediately get the X-ray and get you out. Generally if health care workers know what they are dealing with they will go out of their way to help. I don't remember if your husband is still eating well, but can you bribe him with candies along the way? My heart dropped when you said it may all fall through. The difficulty in getting a TB test alone should convince you that now is the right time for placement. Thank you for sharing this situation with us. Your thoughts, emotions, and the details of your particular situation help all of us understand what we may be facing and give us valuable coping information.
Fiona: My DW had to have a chest x-ray when I took her to the nursing home in Dec., but, they did it right it the facility. There are people now that will come to the ALF and do that for you. And medicare paid for it.
I am with you, in thought and prayers, all the way on this. Many of us have already been thru what you are going thru now but that doesn't make your journey any easier.
Fiona, I can imagine you are in a panic. I wish I had thought to mention he would need a TB test but thought for sure they would have told you already. In our case Lynn was already getting a nurse to check his vital etc. so it was simple to have her come down and give him the test. Maybe you could also call the ALF, I am sure this crunch has come into play before. Lynn did not require a chest x-ray to be admitted to the nursing home, but Dean is correct, they can do them right at the facility. I am keeping you in my thoughts and hoping everything falls into place ((hugs))
That is great Fiona! And please, I know how hard it is , yet, with the way that my DH went down oh how LUCKY I FEEL he is in placement. It can happen in an instant. Your guy sounds truly ready , and so do you. Just know that in a couple of months it will get much easier.
Wow. He's really giving me a run for my money these last few days. No anger or belligerence today cause I stopped giving him Haloperidol, but constantly confused, sundowning, talking gibberish, wanting to GET OUT OF HERE. it's after 10:30pm and I just doubled his Ativan (don't tell the Dr!!) and finally got him into bed - fully dressed of course, but I'm not arguing. I hear him mumbling to himself in there and am afraid that he might be getting up again.
Tomorrow night I may camp out in the parking lot of the ALF. Geez, I cannot imagine how I'd be handling this if I didn't know that I've only got one more night of these new behaviors.
Well, now I get to take my glass of wine and fill out all of the application paperwork tonight. Whoo hoo!
you see Fiona, you second guess yourself, now you know. THANK GOD you have things in order. It will be fine, he will eventually adjust and will actually likely be more happy there. Today I saw my guy, and I could see that where he is staying is actually better than here with me, where it is quiet and I get so frustrated. His place now has the couple, their old Mom, their son who is also a nurse, a myriad of chihuahaus and roosters and goats and even wild pigs. Lots of action and they take great care of him.
I'm feeling pretty good about tomorrow when I'm taking him to Sunrise - especially since he never did settle down last night and was, in fact, up until 8:30am today. He has been sleeping since then and it's 10:30pm. I'm out of my depth now and can hardly wait to turn him over to the professionals.
Coco, I love the visual that your description of Dado's new home conjures up. What a special place to get to spend your days.
Well, placement today was a success and almost a bit of a non-event. After being up all night Thursday, he slept thru Friday until I woke him at 9:30 this morning. After more than an hour, he was finally cajoled into getting out of bed and we were out of the house just in time for his daughter and family to come and move his stuff to the ALF. We visited with my brother meantime and when it was time to drive him to Sunrise, I started an inward panic. But we got there, he recognized it from our previous visit on Tuesday and said " oh, we are here again. Well, let's go in". I almost fainted, thinking I'd have to wage a battle in the parking lot to get him in the building.
We went in, he was welcomed by several people, we went upstairs, I told him we were having work done on the house, so we'd be living here for a while (using Emily's fiblit) and he just seemed to accept it. Shortly after that, I left him with staff so I could sign more papers and then I left. His daughter visited for a while this evening and I've called a few times. Although he's still awake, he's calm and watching ESPN with the night guys. I am so relieved and, hopefully, am going to sleep well tonight.
Thank you all for your advice and support. It has kept me strong throughout all of this. Now comes the next stage but, reading through previous discussions about placement, I feel I'm prepared (as much as possible) for any issues that may come up.
Fiona: I am so happy for you that this went well. Isn't it amazing how different your house is now. I was almost lost in my own house wondering what to do and it seemed (it literally is) so empty.
Thanks for your support. Day 2 at the ALF and he is calm. I was there with him for a couple of hours today. He showed some recognition when I arrived but not much throughout our visit, although he was tired. When I left I told him I was going to a meeting and he didn't question it. Not sure how long this will continue, but I'm enjoying it now. Now I have to discipline myself to get into a routine, rather than staying up til all hours (it's after 2am here) watching TV.
Fiona, so good to hear he is transitioning so well! And good luck on getting your sleep schedule back to normal. Four years later and I am still up in the middle of the night.