Yesterday I made the decision to make John's nh stay permanent. He has been there since April 24th as a rehab patient after a hospital stay. He was moved to the alz. wing after an "elopement". Since he never wandered before I choose to believe it was providence that led him to the secure unit. This allowed me to see him in the surrondings he would be living in if he were a resident without the commitment. Much to my relief and dismay he adjusted very well. Somewhere deep in my heart I was hoping he would be miserable so I could bring him home and do this at a much later date. I dislike myself for doing this, but I even tested him by bringing him home for 2 short visits. Both times when I said it was time to go back he just got up and went to the car. Maybe somewhere in the plaques and tangles he is doing this for me. I was worried he would be lonley or bored but the reality is he has more company and activity there than at home. He is doing art projects,playing games,listening to live music and even went to mass. At home he looked at tv and ate. The activity director said he's terrific because he'll try anything.(Not the John I know.) I also signed the dnr-cc form. We did our living wills sometime ago and I will honor his decisions from that time. I don't know quite how to explain this but placement is not the relief you might think it is. Daily visits help but there is a huge hole in my life. It's a hole only John even is his current condition can fill. I would take back the frustration and exhaustion in a heartbeat if I thought it was the right thing for John. There is more to say but I'm a little furklempt right now. Thank you all for being my friends. cs
cs--that must have been a very difficult decision for you to make, although it sounds like it was the right one for John. My prayers and support are with you.
cs_i know how you feel, when I placed my dh it was so difficult but when i go and see him now i realize it was best for him, although he won`t socialize with anyone he is getting the care i couldn`t give him at home, right now home is the place i sleep it doesn`t feel like home without him here, everyone tells me it will get better so I do the best i can without him, there are times i want to take him home then i go to visit and I know I made the right decision . ((((((((((((((hugs to you and John))))))))))))))))) by the way my dh`s name is Bob.
CS, its a good decision and the best for DH now that you see he is adjusted and doing so well. i was thinking reading your post that i would be elated and at the same time distressed too, over the fact he adjusted so quickly and is having such an active time at the facility. i am relieved for you, in time you will adjust yourself and find it was the right choice for both of you. divvi
Cs, I thought I was doing o.k., but when I read your comment, I started to tear up. I think it is because I know how you feel.....my DW was in a NH for 3 months for rehab after a hosp. stay of 8 days after having a seizure. I know how the house just becomes a place to eat and sleep, and that your heart is not there, but is with your LO. (((HUG))).
cs, I think the fact that John has adjusted so amazingly well is testament to you making the right decision for him, and unselfish decision. Now comes the time to rebuild your life, reinvent yourself, as they say. You can still spend as much time as you like with him, only without the frustration and exhaustion. Try to keep this in perspective, easy for me to say, I'm not there yet. However, if he is happy and interacting, you have done a good thing. BRAVO TO YOU. Arms around and around, Susan
cs, I'm so sorry that John arrived at this stage. Hopefully he will continue to do well there. I can only imagine what it is like to have an empty house. I agree with what the others have expressed, and also offer a BRAVO and ((HUG)).
cs - I read your post with such mixed feelings. It is so wonderful that he adjusted so well (that was one). The other one was - what a rat, how dare he insult all your efforts by adjusting so easily..... You said it well, he is getting care that you cannot provide for him and that makes it a good choice for him.
If you are planing on staying in your home, when you are ready, consider making a few small changes to make it your home. This can include painting a room a color you love but you would never have done with him there, rearranging a room to suit you better, add different pillows to the couch. Doing this won't destroy the memories but it will help to not have them stare you in the face everytime you are home. Change out your bedspread to something really frilly.
When I placed my husband, I made it an excuse to take over his closet and dresser. It was enlightening cleaning all of that out (got rid of some and kept some for his future use). I found out he had more sweaters than I did and never mind the number of golf shirts. After going through all of that, I decided that he didn't have a leg to stand on when he talked about all of my clothes.....
When I went through my husband's part of our closet I felt like I was throwing our a part of him with every shirt I took out. I also redid the house in my favorite colors. Still hurts
I feel the pain in everyone who has placed their loved one but it encourages me when I hear well most of them have adjusted well. I am tying up loose ends and doing the paperwork to have my husband placed. I DON'T WANT TO but I have talked with his brothers and sisters, his son, my daughters and the doctors. Everyone agrees that it has to be done. And I am doing it for one reason only. He deserves better care than I am able to give him. I still work full time and can't quit because I am not old enough for social security yet and need medical coverage. I am cross with him when he can't sleep and I need to and I am feeding him frozen and canned junk because I am too tired to cook. He deserves better and I am doing my best to give it to him.
ehamilton, sometimes it takes courage to do things we are not ready to do and it sounds like you are in that situation right now. I understand about your needing to work and I am glad your family is supporting you with this decision. Do not feel guilty because you have done the best you can. I am sure you were taking good care of him to the best of your ability but we all have different situations and I surely understand your need to keep your job. I hope your dh adjusts as well as many of the others we have been reading about here. Good Luck.
Thanks to all of you for your concern,hugs and suggestions. I'm feeling better for having read your posts. Therrja... I've always wanted a blue and yellow bedroom. lol xox cs
ehamilton, I have not had to deal with this - yet. But, you have done all you could do for as long as you could. You will still be able to advocate for him and see that his care is the best it can be. You have to live your life too and take care of yourself. Thankfully, all relatives and doctors are on the same page as you! I do hope it all goes well for you.
Jim has put on a ton of weight as is the case with most FTD patients. Today I needed to room in our closet and I thought of so many of you who have clea n out closets for varyious reasons. As I packed up clothes that no longer fit him I had a glimpse into the future and cried. It was so hard and I was hoping his nap would last long enough for me to finish my task. He did. Earlier, I had asked him to help me, and he snapped at me to "leave my stuff alone!", very unlike him. So for now the small pants, are put away and another day I will tackle the shirts.
Therajja, I love the idea of redoing the bedroom. I think a fresh coat of paint can be very theraputic. I've wanted to paint our bedroom for a year now. I will wait and do that when the time is right.
cs, I'm glad you are feeling better, just take it one hour at a time and look forward to some nice visits without all the work and responsibilty. You CAN do this.
It is appropriate at this time that I make my comments here. I have been putting my ducks in a row also trying to get prepared to place my DH sometime soon. I did find a lovely NH not far from our home that has a years waiting list. I am feeling guilty and unsure of myself as this decision comes up. Hopefully, I won't need to place him for a year, you never know. We have had such a hard time in the last couple of months. He is deteriorating rapidly. The neuro has commented on that and even our children see it. So.....I sympathize with you cs and ehamilton. It is hard to know when the time is right. You want to hang on longer than I suppose you should. I am thinking that we all hang on far too long, for our own sake, not for theirs. I also am thinking that you must love them more to let them go and give them the best you can. Not an easy call. My fear is that my DH will not adjust as well as yours. You are very brave and I am in awe of your spirit...may you be peaceful with your decision....M
It's unreal how much we all think so much alike, after reading this thread I feel almost normal now. Since placing my DW in the NF last week. We have: rearranged the furniture in the living room, bought a new bedspread several weeks ago, I have a date with our daughter tonight to go out and buy some new pictures for the living room and will be keeping an eye out for new pillows for the living room. We will be rearranging the bedrooms to get rid of the "sick room". Maybe the house will feel a little more like mine instead of ours. I've also got closets, magazine racks and drawers to clean out.
I think we all wait to long to place them in a nursing facility, my DW has adjusted very well within just a few days, she has company, things to do, regular meals and good care. I was shocked I had expected a much more difficult time with placement. I think now it is the best thing I could have done for her given her present condition. I had many misgivings and second thoughts about placing her. I had to know it was the right thing to do.
how do you all just clean out the closet and dresser? i am having a hard time to do that, i have put a few of my winter clothes in his closet but just can`t bring myself to put his stuff away, am i just trying to hang on to him, i feel as if i put it away that means he is dead to me or maybe he will come home someday the decision to do is is so hard helpppppppp.
marygail, I'm one of those people who can't throw things away. So what I do is pack things up into boxes and put a "burn date" on the boxes. Right now one of my "boxes" is actually a drawer. Once things have been in a box or drawer for a while, I can deal with getting rid of it.
I also keep a "give away" bag in my closet. When it is full I take the bag to Goodwill.
Give yourself some slack here. For some of the people on this thread painting bedrooms and cleaning closets HELPED. But you might need to wait for a while before you do it. At this point in my life I know that when the time comes I've actually mentally "boxed" half of his closet already. Boxing the real clothes won't be half the job that it might be if I hadn't already "noticed" that he won't ever wear half of the things he owns anymore.
For me the garage is the worst!! DH has so many tools and gadgets. When he was in the very early stages he would putter around in the garage and if he couldn't find something he would go buy a new one. And he would just throw things here and there on the bench and shelves. I know I need to start organizing and getting rid of things, but I just haven't the energy to attack it. I am also now ready to get rid of his art supplies. I know he will never use any of them again, but it is hard to know where to start.
I invited my children to the garage and told them to take all tools that they could use-but to leave enough for me to have on hand for repairs I could do myself. I got rid of almost everything else. I try to put something from the garage shelves out with the trash each week.
marygall when my cousin's husband died unexpectantly a few years ago she told me she just couldn't do anything with his clothes yet, so she waited a few months until the time was right.
gmaewok, I know what you mean about the garage. I start on it and don't know what should stay and what could go. Son in law is going to week some of it out for me so it will be more managable. DH is still home so we will be careful not to remove anything he will miss. Our kids all have planty tools like we have so I am just going to let SIL give them away to someone else.
On the art supplies, do you have a friend who could help you decide what to do about them? If they have value perhaps you could combine groups and sell them or else give them away. Not too many people talented to use art supplies. I gathered up a lifetime of my sewing things and gave them to a lady sewer who does alterations for people and she was thrilled to get them. I gave books to our Library.
CS, I know how hard is for you right now. What a tough decision, but your dh is in the right place from what you have said. The activity is so good for him, and keeps him active. Hang in there, it does take a while for you to adjust even if it is never the same. It is a time of grieving for you. Give yourself some time, as you have been through so much. Love yourself and take care of you. You did what you could for him (and will still do what you can - just on a different level) take some time for yourself.It has been almost 18 months since I placed Ralph and it was difficult. I could not take care of him at home now at all.
I too, have finally felt like going thru some of his things. The garage is finally cleaned up and I also found multiples of tools. Can't find - go get another one!! Working on clothes now (his and mine). After seven years of not doing anything to the house, am considering some remodeling. I know just new pillows and pictures give a change - what ever works for you. I found if I just get out of town for a day or two every month is so refreshing for me.
Boy, do I know what you all have and are going through! Just finished a 3-month declutter/organize effort with a professional for the house and garage. I have not yet tried to dispose of any of DW's clothes, even though she doesn't wear 90% of them anymore. Its like considering her gone already, and I'm not ready to handle that yet. So....they will just wait until I am ready or she needs to be placed. Organizing involves reviewing a lot of memories materials which makes it sad to do also. That's why I hired a pro. I could not face that alone.
Suggestion as to what to do with clothes: donate them to nursing homes, ALF, Memory Care Units. Even if you spouse no longer can fit into the clothes, most likely there is someone that will. The VA Alzheimer Unit my FIL is in dresses the patients every day. They do not leave them in their pajamas/night clothes during the day. Even if they are not ambulatory, they still dress them and take them to the 'living room' if at all possible. When we were back there in 2006, we went to yard sales and got real nice sweat shirts and sweat pants we bought and donated. Make sure they are elastic waist pants. Shirts and sweat shirts are welcome. Socks and slippers.
Nursing homes may not do this, but ALF probably do. And, no matter how many clothes you take in, they disappear. Or there is no one that visits patients and when their clothes wear out or they get smaller/larger, they need clothes. My mom spent the last year in a nursing home. When she died we let them keep the clothes she had and they were most grateful.
gmaewok - get rid of things on your own timetable. I have known people that do it right away and others that can take a year or more. I would think it could be more difficult when they are still living even if it is not the life they had. I think it may depend on how you mourned as they disappeared from the person we know and how well we detach from the AD person. So, don't feel bad because you are not ready.
Women - before you get rid of the tools, get a toolbox and put one of the various tools even if you think you might not need it. Maybe a son or neighbor can help choose a good set. Then look at craigslist, phone book, newspaper, or ask around for someone that will come in and by it all.
As I had mentioned, much of Jim's clothes do not fit due to his weight gain, I boxed the pants yesterday, but I am keeping them incase the time comes that he loses weight and can wear them again. I will do the same with his shirts, later, when he naps. We all have to do this at our own pace. My Mom still keeps my Dad's cologne and bathrobe. It's been 6 + yrs, but it is comforting to her. I sometimes wear Jims cologne, just because it brings me comfort. He is so quiet.
As far as donating arts and crafts supplies, paper, etc., please remember that local school budgets have been cut tremendously just about everywhere. Those things would be very welcome at most elementary schools. Or, if you know of a homeless shelter that takes women with children, people never think to donate things like this to them.
You may have someone else in mind. Jim was hospitalized several times for depression, anxiety and eventually suicidal ideations before the correct diagnosis of FTD. What a mess that was, for a whole flippin year and a half.