In July of 1998, I had to place my mom in a nursing home as a crisis case. The other day, I was getting close to the facility and suddenly was overwhelmed by the memories of that day. They are as vivid and almost as painful as they were that day. I can see her standing by the elevator as we were leaving. She looked bewildered. If that was and is so painful, I can't begin to guess what so many of you have gone through with your husbands and wives. Perhaps God was kind when he took Gord before we had to do that.
My DH has chosen to go into the LTC himself. He needs more activities and structure then I can give him and the personality problems he has are just to much for me. My son called me today and is worried about me. He offered to take his Dad to the LTC instead of me taking him, but I just can't do that. This is my husband and love of my life and it is for me to accompany him there. I know it will be the most difficult thing I will ever have to face but face it I will.i will go up to his room and help him get set up if he wants me to but I expect he will want to do that himself, but I will go up anyway for a few minutes. My DH is giving me a great gift by going at his own time and when he is able to make the decision himself. I think I would have had a very hard time making that decision or knowing when the time was right for him to go. This is best for us.
My thoughts will be with you Jazzy. I have had 2 friends place their husbands because of Alzheimer's. It has been difficult and painful for them as it has for everybody on this forum. This journey is tough from beginning to end. I think we are all strong because there is no choice.
We placed my wife this month. It has not been easy, but it was easier when we remember what a good night's sleep was all about. She is doing well, mostly. We have almost 15 years with this disease and we (daughter and I) are/were totally exhausted.
I would accept his help but he has bipolar and OCD and is on some very heavy drugs. He can get really emotional and we, My DH and I, are not sure he can handle leaving his Dad there. It may just push him over to a not so good place and it will take to much out of his partner and to much time to get him back where he is dong well again. He is very good with his Dad and takes very good care of him when he has him but this may be to much for him. He has been more help then any of the other four that are very healthy. He says he has some idea how His Dad feels. Strange how the very ones who you think can't help can and the ones you this should won't. Strange!!!
Since the point of someone going with you is to give YOU support, yeah, having your son their might just drain you even more. I suggest that he visit after you visit your hb for the first time after the move. You want to be sure your husband is settled before others visit. Sorry that you have this much to deal with.
We had 37 years of travel and just lots of fun and love until 2003, when I started to notice changes that I just couldn't figure out. It took until May of 2012 before I had a dx of what the problem was. He has been on Meds since 2009 off and on. D's can be such jerks. He was told by one of them to go off the Meds and " suck it up" can you imagine. As far as DH will be concerned, I will be busy getting the house ready to sell and will not be visiting to often. Besides that he has told me I may interfere with his activities if I visit to often, so he will be on his own for a few weeks to get adjusted. Right now I am having trouble with him not giving a hoot about taking my advise and he will turn off the air in the car rather then put on his jacket and the same in the house. It gets me pretty sleepy and I am going to have to not take him anywhere if I need the air on. Week ends are getting tiring as he gets bored and then get testy. He is number five on the list so it won't be long.
I can still picture our former GP. After promising to always be there for me, we were in the examining room. He sat there with his arms folded, his legs extended and began with telling me that I wanted a magic bullet. My mouth opened and closed wordlessly. Then, he began a long lecture which involved tau, plaque and railroad tracks. I felt as if I was watching an accident about to happen. Somehow, I knew where this was going but was powerless to stop it. He did his big finish by telling Gord ," your brain will continue to deteriorate and then you will die." He said this as if he was telling him the price to have his car washed. By the time we were back on the ground floor of the building, Gord had already forgotten the words but the impact stayed. It was months before I could get him there without a fight. He no longer remembered the words but he remembered the pain and the fear.
I don't think I will ever forget my anger which is still with me. Thank God he retired.
jang*, I am sorry you had such a difficult day and that memories were haunting you. I am also sorry to hear you had such an ass for a doctor, what a horrible way to tell Gord and you......
Dave, so good to hear your DW is mostly doing well and that you and yours are catching up on your rest.
Jazzy, I am glad that you are now able to look upon your DH wanting to go to the ALF as a gift to you. It would never be easy, but I hope it does bring you some measure of comfort that this is what he feels he wants and needs.
We had my grandfather and an uncle in the same facility where Lynn is. One of my closest cousins just cannot even go in the building (the uncle was her father). However, when Lynn is in the hospital she is right there offering me support. She knows I have very little support and that Lynn's children do not visit. Once when we were talking she shared how badly she felt that she can't bring herself to visit us at the nursing home. I told her truthfully that her real desire meant just as much to me as a visit would.
For me, the horror of placing Lynn has softened. When I think about Lynn being in a facility it of course still makes me sad, but those feelings are quickly replaced with all the laughter and love we have been able to share while there. He is so happy and truly doing so well, much better than I ever dared hope. When our war is over, I am sure it will be difficult for me to go back there....but it will also bring back so many treasured memories.
There are rude, thoughtless people on both sides of that fence. A former patient called a doctor's home and said to his wife, "I heard the doctor has Alzheimer's, is that true?" I agree that some doctors are jerks, but there are jerks everywhere. The problem is that the medical schools don't weed out students who are socially unsuited to practice clinical medicine.
Neurologists are not known for their bedside manor. I was told this 5 years ago. I know at least 2 that have nice personalities, I went to college with one of them. The other was a speech therapist before she went to med school.
Jazzy -- I'm glad too that you're able to view your DH's desire for placement as a gift. Even though I know how painful it is to be shut out of this decision, it is far better than major resistance. I worry every day about how I will handle placement for my DH. I can't ever bring up selling or leaving our home for something smaller or cheaper -- my DH has always been resistant to that. He hasn't had any awareness of the difficulties his AD has placed upon me or the rest of our family. I hope I can manage him at home for as long as possible. For a while I entertained the idea that we could move somewhere together that would make caregiving for him easier so he can remain at home. But the longer I deal with this, the more I see that in the end it will probably be placement for him and somewhere else for me.
Update: Wife is doing fine in the nursing home. The CNA's say she is an angel. I can sleep now without outside interruptions, but I don't do it very well. By necessity I am living 4 hours from my wife, so i don't see her as often as I might wish, but she does not mind. Time is not relevant to her now. The staff at the NH take good care of her. I am back to living in our old home, the one we raised our kids in, the one i designed and built and now am rebuilding after a "water incident." I don't mind being alone most of the time. I have lots of 2nd and 3rd stage friends here, my first stage friends moved away recently, so I am alone more than I wish. Onward, I guess.
I have not been prepared for this gut-wrenching placement of DH. His room in the ALF is being prepared as we speak. I just can't imagine being without him as we have had 59 yrs. of good marriage (with exception of ALZ).
We are telling him the truth which he will not understand; that is has to be in a safer place than we can provide.
I really thought I would be able to care for him to the end but now my own health is at risk and if I get sick, who cares for DH?
He doesn't notice my eyes constantly filled with tears which is just as well.
There must be a reason for all this but it sure is difficult to figure out.
Now I now first-hand what so many of you have gone through.
Shirley, It is gut wrenching for sure. My DH of 48 years has been in a care facility for over two years. Let your tears fall as often as you feel like. Give yourself a hug and know that you were a wonderful caregiver in the home for as long as you were able to. Adjusting to placement and accepting it will take time. Be kind to yourself and take all the time you need. I hope it goes well for you and that your DH easily adapts to his new home. I hope that before you know it you will be rested and can enjoy visits with your DH. Take care of Shirley.
Shirley - I know how you feel in 10 days mine goes in. It's like is this really happening!!! Now what am I going to do with ..... insert concern here. I think I'm lucky because I will be going back to work on the week of the 4th of Nov so my days will be busy around people.
((((Shirley))) I know the pain must be unbearable at times thinking of the pending placement. its the beginning of a new change in live for you and him. nothing can prepare us for this trauma. wishing it goes well and he and you adjust soon. divvi
Shirley, I also know how you feel. My DH has been in the Veterans Home a year now. I knew it was coming close to the time to place him (family & friends knew it was PAST time) when he started getting extremely aggressive. He tried to hit me & I called the police who took him to the ER. The hospital wouldn't keep him (I walked out & “abandoned” him, but they sent him home in a transport ambulance after they “drugged him up.”) Fortunately I had filled out most of the paperwork for the Veterans Home because I was going to put him there for respite. I placed him there a week later so I really didn't have all that much time to think about everything because I was too worried that after the drugs wore off he would become aggressive again.
The day I placed him everything seemed to happen so fast. 2 of our children were with me & our son made me leave the unit. Before I knew it we were leaving the building & they took me out to lunch & gave me a margarita to drink!
Of course it didn't really hit me until that night when I was in bed alone. Then the tears fell.
I will say that he did adjust & now after a year he needs total care & he is getting the BEST care there. His aids are very kind & they treat me like family. And now when I go & visit him I feel the love for him that I thought was gone.
Tonight I marked a lot of dh's clothes. Will do more as time progresses. DH doesn't even know what I am doing. Monday he will be placed and DD will be with me. I never envisioned our lives finishing this way.
I wake up during the night crying and thinking I can handle things at home longer and dh shouldn't be placed but when daylight comes and the day's activities begin I quickly realize I can do it no longer.
I will not even be able to take DH away from the ALF by myself for a couple of hours because he is too unpredictable and uncontrollable. I would need a man with me.
Shirley so many going thru the pains of placement lately. wishing you a quick transition with a lot of knowing you are doing whats right for you and DH. when the time is right there is no denying its what is best. divvi
Shirley, many have said this day is the worst single day and it was the single worst day for me. This is such a painful thing to go through. Stay strong.
Life changes when we start having time. You've gone through a lot without much time to yourself where he's also in safe and professional hands. Now that will start to change. Try to understand that you are under a great deal of strain that has built up and now is peaking with this day and then immediately changes again because he is not there when you get home.
There is so much we're called upon to do. Part of that Shirley should now be some kindness to yourself in understanding that it's you that has gone through a lot and now when some time comes remembering that you need some healing of your own is an important thing.
Shirley, thinking of you as you approach tomorrow. I was going to be right there with you - but complications prevents that from happening, so we will still be at home. Many hugs, positive thoughts and prayers for you and your DH.
Thank you all for your support. It feels somewhat comforting to know there are others who have gone through this and others who will most likely face it in the near future. This has to be the most difficult thing I have experienced; emotionally and physically. I guess I have led a pretty sheltered life. It must be akin to institutionalizing a child.
DH has been in the ALF for 6 days. I am still disjointed and aimless in my doings, i.e. I start things but don't finish, fight off extreme tiredness. I really can't even talk about anything much right now. I will post more as I go along but I have to say DH is adjusting a lot better than I am.
Shirley, I am glad to hear that your DH is adjusting to the ALF. Please give yourself permission to do nothing for as long as you want. My husband has been in an ALF for going on 6 months and I'm still in a self-imposed timeout from life. Outside of minimal care of the house and yard, my only focus is being with him. Otherwise, I read, nap, watch mindless TV. Sometimes my family reaches out, but I've discovered that I need solitude to rest and recover. It will take as long as it takes and THAT'S ALRIGHT!!
Solitude to rest and recover...isn't that what we all need as caregivers. And I can only imagine how much after Placement...as long as our bodies need! Take care.
I have finally got a call that my husbands name has been put on a list. They ask for three options of where he can go. I am so glad that we are now a step ahead. I have been really sick for a week and of course he doesn't get it and I am mentally, spiritually, emotionally and physically bankrupt and it is very hard to hold my temper. Last night I could have sat down and cried but I am scared if I start I won't be able to quit. My love is starting to turn into resentment. I have had 3 days off from him since 2009 and I am really pooped. The next hurdle is costs because he doesn't make enough on his pensions so I have applied for Senior's benefits but don't know yet what is going on. He does have a well to do brother if that is my only resort to make up the difference. There is no way that I can go back to work, I have been off since July on stress leave but he can't be left along for even half a day. I will retire at the end of December and accept the pensions that our government grudgingly give us. I will have to locate to another town about 125 km away but both of our kids live there. They are actually not much help though. Maybe if I threaten to move in with them I would get some results ha ha.
A bit of an update here. Wife is doing as well as can be expected, I guess. Slowly she is curling into that infamous fetal position. I go to see her, we go to her room. She in her wheel chair me in my recliner that I brought to the NH. We hold hands and she sleeps. I am glad to be there with her, but it is also emotionally draining. She talks constantly when she is awake, but it makes no sense. Today daughter took a George Beverly Shea album over on her iPhone and wife perked up and sang along with the songs that always meant so much to her. We have 11 grand kids, but most of them have few memories of their dear grandmother when she did not have this horrible disease. I beg them to hang onto the good memories they have.
Velvet. You spoke about resentment. I can relate as that is the main reason I placed my husband. I was consumed by anger and resentment and it was destroying me. Since he is placed it is better but honestly when they are placed it is still not over. He seems to have adjusted well. I am still wading through Medicaid. I am in the process of spending down the assets and have an attorney working in it. Once the financial piece is in place I can rest a bit easier. He is losing weight and has lost 6 pounds in October. I can understand it if he were not eating but he eats everything on his plate plus snacks. They are starting boost but I think there is something else going on. He has emphesema and tarted the nebulizer treatments again which creates hand tremors. For me it was more mental and emotional exhaustion. His needs were so great that emotionally I felt as,if I was suffocating and losing myself to,the disease. My best to you. You are moving in the right direction.
I have been sick for a week and am thoroughly frustrated because he doesn't get it and still makes his demands every 10 minutes. I am wore out. Went to the Dr. today and asked if I got desperate could I have him put in the hospital in the extended care unit until his placement. Dr. spazed out and said NO we only use that for respite. I asked how long is respite and he had no answer said he had to check it out and get back to me. Put the note in his frigging pants pocket - probably go through the wash machine. This is a Dr. who just likes to stamp stuff and initial it. I really think that he needs to retire. He did place me on sick leave from work until January 15th which is a good thing I guess there is no way that right now I could even think of going back. I was gone to my appointment for an hour and a little bit and came home to a big mess. We had a big snow fall last night and he insisted constantly that he wanted to go shovel the snow. I finally relented as he was demanding every five minutes so I got him all dressed up and sent him out. He gets the shovel upside down and shoveled the grass and got no where near the sidewalk. My neighbors son came over and redid it and when I commented that it was nice that someone did the snow he said well it was me. Whatever not going to argue over something that is so stupid. I am a little calmer tonight because the work thing is handled but the husband thing is here to haunt me. My sister in law said just call an ambulance and send him to the hospital but after talking to the Dr. I don't think they would admit him, so I am at a loss again. I have to think this out before I have a nervous breakdown. I want to be 16 again and know what I know now so that I can rethink my life and not follow my heart. Thanks for all your comments they really put everything isn prospective for me. Things I didn't give enough though too. I am so happy that I have found this sight because it probably saved my sanity.
Velvet, I am so sorry that you are feeling poorly, and that you don't appear to be getting much help. I don't know how "the system" works where you are, but here, if I want to put my DH is respite, as I did recently when I needed surgery, I have to call the social worker and she makes all the arrangements. Is there someone in social services in your area you can call? You obviously need a break if you are going to recover from your illness. Your description of your LO doing the snow shoveling reminded me so much of how my DH destroyed an area of our lawn with the grass trimmer. It was at that point that I realized that no matter how much he said he could still do the yard work, I would have to either do it myself or get someone else to do it. That was a year ago. I'm lucky because he no longer insists on trying to do those things. In fact he does very little anymore.
I am sending you hugs and hope you feel better soon
Things got a little easier here when DH quit trying to do things. A couple of years ago, I was going crazy and crying all the time trying to cope with him messing up everything.
I will also recommend talking with a social working about setting up respite. You will need help if your hb will not cooperate. I am sorry you are having these problems.
My wife never destroyed the lawn, but she campaigned for letting it go to heck, never wanted me to seed it or water it for a few years, said weeds were fine, as long as they are green.
I did try for respite before but it was when I was working. I would feed him and come home at lunch and make sure he was fed and settled. They refused respite because I did leave him alone. I need to get a hold of the Health Unit and see what I can work out as I am now staying home. I know right now that he will not co-operate but enough is enough I need to save my sanity. Same with a health care nurse coming in to bath him. I do it every second day but it still a struggle. I think that it is time that he swallows his pride and he will just have to suck it up. My God I just looked out the window and it is SNOWING I will have a very interesting morning.
My dh while I was gone went down to the shed to see if he could fix the door. Some how he got over into the rocks, fell. Has a skint place on his forehead, nose, above the lip, and on the chin. He said his this one ( the right leg )was under him and he didn't know how to get it out. He said he was there over an hour. He said someone had called an ambulance, he heard it go by, but they couldn't see him cause he was down there. He finally was able to crawl over to the shed and pull up. He then called me, I was stuck in traffic. I really feel bad about it. Thank goodness he wasn't hurt bad. Bonnie
Just an update on my day. We did get more snow. We live in row condos with a garbage bin at the very end. That is his job to take the garbage to the bin. Still does that really good. He actually shoveled the walks today and got the walks not the grass. He was so happy that he could do something and I gave him lots of praise so it was a pretty good day.
My prayers and hugs are with you. Placement is so difficult. We know it has to be done for our own health and spouse's well-being. It will take time but eventually we will see we did the right thing. We all have limits and we have reached ours.
He was admitted to the nursing home around 2 p.m. He never woke up from being transported from the hospital hospice unit to there. He did open one eye while I was there, and I was holding his hand and then I called his name and kissed him-but there was no response - just back to sleep. Hospice is also on board there, so another set of eyes for me. Long,long day - 4 hrs. with Medicaid this morning. Took a few things over for him this afternoon and will take more tomorrow. My heart is broken.
Vickie, I am hurting for you and I can't seem to find the words that might comfort you. I know when I placed Cordis I put myself on automatic pilot and did what I had to do. You are a strong and caring person and you will get through this. Love you....
I too hurt for you Vickie, and as Bama said, there just are not the right words. Even knowing that so many of us hurt so bad, it is still YOUR hurt, and your life's challenges. But, we are here dear friend.