former soulmate--Here's another way to look at respite care: It could be a "try out" for placement. I, too, don't want a catastrophic event to force placement, nor do I want to become so worn down that I do it out of desperation. However, maybe part of the calm, rational decision process that we both prefer could be a trial of one or two facilities for short respite periods--to let you see how your husband does, how YOU do, how you like the facility, etc. Maybe it's possible to approach placement in a similar manner to any other big decision--gather information, evaluate, try out different things, etc.?
weejun, hoping you get relief physically and mentally sweetie. its very hard decisions to make. i think you are doing the right thing in caring for yourself now. divvi
Wolf, I also thank you for your comments. I think that I am somehow trying to justify placing my DW without feeling guilty about doing so, however I realize that it will be the most difficult decision that I have ever made and that I will feel guilty, no matter what. I worry about her being taken care of the way that I do and I will stay involved to make sure that she is well cared for. Early on I felt that both our lives were ruined and that our lives were over, with thoughts of ending it all for both of us. With time, I have realized that was not the answer and that my life will go on even though my dear wife’s life has virtually, already ended.
Thanks, all, for the loving, caring comments; much appreciated.
Yes, Wolf and others, you are so eloquent and I thank you for saying some of the things I feel yet am unable to put into words. However badly I feel about our present situation and circumstances (mine and DH) I continue to feel no guilt. I didn't cause his disease, I cared for him lovingly for as long as possible and I placed him out of the need for self-survival -- all guilt-free issues in my mind. Yes, I feel many, many negative emotions, but guilt is not one of them.
Weejun, you are very special to me, and I send you love and prayers. I think that you and I have travelled a similar road with our husbands and our back pain. I'm confident that the pain will lift, and you will feel more like yourself. Identifying with you makes me feel better about myself.
Weejun, so good to hear from you again although the news right now is sad. Sure hope your surgery proves successful and that things are better soon.
I am placing my husband 10 days for respite care in October, and yes, I definitely see it as a kind of try out for placement. I hope to be able to get some idea of whether placement now or soon would be a good thing (rather than waiting for a catastrophe). The facility rep who is arranging the temporary placement said I should not be suprised if dh seems quite settled in by the end of the temporary placement. It seems incredible to me that the time seems to be coming so soon, I would miss him so much. As I told a friend last week, he is what I do. Meanwhile he is going to day care four days (instead of three) starting this week. And I have an aide in once a week to give him a shower.
Jeanette - "He is what I do". I like that. Even though my husband is in full time placement, he is still what I do. Can't imagine my life without him even though he no longer live with me.
I have been rereading the posts here above by Weejun and others because I have taken a major step: Talked to the social worker at the care facility last week and decided to put dh on the waiting list for placement. He won't really be on the list until after I get home from my Christmas travels, and even then it could be a number of months before they find a spot for him -- he is not an urgent "case." This gives me time to adjust to the idea and try to make the most of his last months at home. There is not a single issue that has triggered the decision. I am getting tired and I don't want to wait until I really can't cope anymore. But I noticed that I wasn't sleeping well, was teary (not typical of me at all) and stressed out. It also helps that he did well during his respite stay in October. He will be staying at the same place from Dec 21-31. I dreaded telling our sons and our friends about the permanent placement but so far their reaction has definitely not been shocked: more "don't know how you've managed for so long." Still have to tell his brothers. I wanted to go over there this afternoon but it's raining very hard. (That's my excuse anyway). Since making the decision I have been better at being cheerful with him and finding moments to enjoy. Knowing that there will be relief soon gives me so much peace.
I am so very fortunate that DH's daughter and I have been on the same page since Day One. She's so supportive, pro-active and just generally wonderful that the other day a friend asked if she could trade her stepdaughter for mine!
I placed my DW in an Alzheimer’s Care Facility today and as I feared, this is the worst day of my life. When she realized that she would be staying at the facility, she must have had a surge of adrenalin because she became more lucid, started crying and saying….. “How could you do this to me?!” “I didn’t think that I was that bad!” “I’ll be good!” “I’ll do better!”
My daughter and I left her then, with one of her regular in home caregivers to help her make the adjustment. Within an hour we were told that she was interacting with other residents and even laughing and smiling. I can check often to see how she is doing before going back for my first visit.
I know it was time to place her and I feel so sad after doing so.
Jerry, chin up. Sounds like she is doing really well. How long are you going to wait before making your first visit? I've been wondering about this, since my dh is on the list for placement soon.
I will check with the facility nurse every day and when she thinks that my DW is adjusting in a positive way, I will then visit. I'm hoping that I will be able to visit on Monday.
Jerry, sometimes doing what you know to be the right thing is so very difficult. It's encouraging that she settled down so quickly. You will continue to be the same strong, loving advocate for your DW, but now you have professionals to help you. Hang in there, try to get some rest and take care of yourself a little now that you can.
Jerry...my heart breaks for you. I do not have the courage to place my dw, and I doubt I would have the strength to leave here there without giving in and taking her back home....You have made the right decision, although I am sure it is a very painful one. Take courage, my friend, and make the best of a bad situation.
I just received my first report on how my DW is doing after her first 24 hours at the care facility. I was told that she got up a few times last night and wandered into the halls but was easy to guide back to her room and into bed. She has eaten well at all her meals and is making friends and interacting with other residents. They told me that they usually like the first visit to be in about one week, but that she is doing so well, and if she continues to do well, that I could visit her on Monday. So I will check back with them again tomorrow afternoon. I sure do feel a lot better than when I left her there yesterday.
Funny, when Dick broke his hip, last March, he spent a week at a nursing home for rehab. Meicare would have paid for 20 days, and I took him home in 5. Everyone was lovely there, but he wasn't ready. He said to me, this is where they put people nobody wants. Well, since then, he has repidly moved in mid to late stage 6. He had difficulty speaking, is wearing depends, has fecal accidents as well, can't really see things, like your drink is right there on the coffee table.. and he can't find it. In august he had to be circumsized because of infections, he's still getting UTI's, and now they want to do a colonoscopy (see my thread). Funny how much things have changed in a year. If he breaks his hip again, He won't come home in 5 days. or maybe ever. but I guess I'm waiting for another crises.
jerry its good to hear that she has adapted for the better and very quickly. there may be some down times but overall its so nice to see some do adjust so well. let us know how you are doing too. divvi
jerry, so glad to hear your wife is adjusting so well and so quickly. Placement is hard, but I think it is sometimes harder on those of us that are doing the placing than those that are placed. It will get easier and you and your wife can have some quality time together.
Well, my first visit to DW in the care facility was pretty good! I was a little nervous, expecting that she might cry and want to go home, however she seemed very settled and content. The first thing she said though, was “Have you found someone else yet? “ That sort of through me off balance for a moment. It was mostly a quiet visit with my arm around her and holding hands. Much better than I expected.
Jerry, Glad your visit went well. Interesting that she would ask you if you found someone else. Just never know how much they’re really aware of. Keep us posted on how future visits go.
G had a PCP appt Monday, and at that time he said I should consider placing G now. He felt it was past time for the move as his constant falling is getting worse, and I have a very difficult time dealing with him physically. I haven't even started to look for a facility, but after this last week, I know I need to begin the search. I am a victim of identity theft to add to our "normal" lives...really didn't need that add on! I'm not sure if G understood what his PCP was saying...sometimes he is just not paying attention, others he pinpoints every detail of the converstion.
Now after several more visits with my DW at the care facility, I have to say that I think her placement has been much more difficult for me than her. When she was still at home, I felt alone, but it’s so much worse to actually be alone. She seems to be adjusting well but is now suffering from an UTI again (was treated for one 11/29 thru 12/08/10) and they told me that she was somewhat agitated with some behavioral issues but doing better since being treated for the UTI. She also sleeping a lot during the day (she also slept a lot at home), is walking more slowly and stooped over. I don’t know if that’s just the disease or if she will improve after being treated for the UTI. I do think than she is in an excellent facility and is receiving very good care. She knows me (hasn't always known me before placement) and seems to enjoy my visit but can't really communicate with me. As has been said before, "AD is such a terrible disease"!
Jerry, I know just how you feel.My first husband died suddenly but this is far worse. We have a husband or wife but we still don't.Jean has been in the NH for a year now. It hasn't got any better for me. I go to see him three or four times a week and he still knows me. The evenings are especially tough. He's had a UTI also. They said that it's quite comon in Nursing Homes.
It’s strange that at my DW’s care facility and the others that I visited, the residents are mostly women. I guess that means that men caregivers are more likely to place our spouse than the women caregivers or there are more women with Alzheimer’s Disease then men?
I'd tend to agree with JudithKB that women outlive their caregiver. My sister though, who took care of her MIL with AD, insists that men are more likely to place their spouse. Either way, this disease S----s for all, patient and care givers.
Jerry, It's Patty from Albuquerque. Any chance you could share with me the facility you decided on? I know I have to do this relatively soon, and the facilities are just a blur to me. Location is such an issue, too. I am really lost trying to pick a place.
They have a wonderful reputation. I have known people from support groups that had loved ones there and they sang praises. I would bet your DW is in caring hands there.
JF, When I placed my DW, I didn’t tell her until we were actually at the care facility. See my post of January 14 in this thread. It’s been 2.5 weeks now and she is adjusting quite well, but I’m still having a tough time coping with her placement.
My hb is a wanderer and a "get into things" person. Consequently, outside doors have keyed deadbolts. Inside doors and fridge are locked, too. He's also stubborn and is difficult to dress, shop with, etc. So I stopped taking him most places. Last Friday he did his usual wandering off and on during the night. At 5 a.m. I heard a loud crash. He'd fallen by the front door and cut his head and knocked himself out. I actually thought he was dead. I won't go into all the activity that went on, but the ambulance took him to ER and he was admitted. No broken bones; glued his cut head. Nurses had a difficult time keeping him in bed or in a chair. He's a "feeder" so someone has to sit and remind him to eat or feed him. (That was me most of the time.) No wonder he's lost wt because I did neither when he was at home. Tuesday he was moved to the Alzheimer's wing of the local care center where he'd been in July for a week when I went to our granddaughter's wedding. At that time, they said he was fun to have around and they'd be happy to have him return any time. He's a different person now they've agreed. He's to have physical and occupational therapies, but sometimes refuses that and sometimes refuses med. He's been moved from original room assignment because of "roommate" incompatibility. Doesn't initiate talk. He's in a wheel chair, but can move it very rapidly up and down the halls--and does. Doesn't want to join any activities--just race up and down halls. He can walk, but is wobbly; so they prefer that he be in the wheel chair. Don't know how long he'll be there, but I must admit I feel less stressed since I don't have to think about where he is and what he's getting into at home 24/7. I had to beg and cajole to get him to let me change his briefs or change clothes. Couldn't cook w/o his standing right beside me trying to pick things up and move them. He knows me when I visit, but doesn't seem to care when I come or go. Today our granddaughter and her 2 yr old son and 5 mon old daughter went with me. He smiled at them when he wasn't dozing. The women in the unit went ga ga over the kids! He was declining, but I think the head injury has moved him along more rapidly. Has a huge "ostrich egg" on back of head. MRI showed more black spots and brain atrophy. So, the journey continues; sorry for the rambling.
You aren't rambling. You are giving me great insight into what you are going through. This is your life and you are living it as best you can. My heart aches for you because it must hurt so to see your dh like this. I hope when my journey gets to this point I have the patience and fortitude needed. Stay strong.
Zibby--sorry to hear of all you and your husband have gone through. Have you considered making this a permanent placement? If he adapts reasonably well, perhaps you should consider it? My husband is the same as you described--knowing me when I visit, but doesn't seem to care when I come or go. I held out keeping him at home until he was at the point where he'd reached that stage. I certainly agree with you about less stress and not being on 24/7 duty.
Zibby, my life is much like yours. I had 3 hours out this morning and now that I am back in the prison, I feel so sad. Next Tuesday, I take Gord for respite and I am going to a cottage for a week. I dread taking him. He looks for me when I am right beside him but at least I am here. He will be looking for me and won't find me. I also wonder how I will feel after 12 days of freedom to go back to being locked in day after day.
Yes, I've been thinking about permanent placement. This morning I visited him--that is to say, I went to the facility to see him. He looked at me, sort of smiled, and continued his walking up and down the hall. No "visiting." He did take his meds last night, but didn't sleep until 4 a.m. Got up at 11, which is just before I arrived. He was out of the wheel chair, just walking with an aide. Aides are certainly getting their exercise. He's that battery bunny now.
i called a local nursing home this week twice to ask for an appt to visit for the possiblies of respite and then in the future if ever needed placement. no one called me back. bad feeling already!!!
Donna, just go unannounced and ask for a tour...you will see what really is happening. When you have a prearranged time they "pretty" up the place. If you are impressed with what you see you can always come back for an appointment to talk.
Sandi, i guess that is what i need to do. but it upsets me already that they cannot call me back in a week! i am going to go to that one and another one this week when my caregiver comes unannounced!
I know how frustrating this is....it is bad enough we even have to consider placement but then have to deal with all the roadblocks that are put in our path.
Rather than starting a new thread I thought I'd use this one.
After an eight day visit to the hospital for medication adjustment and a series of ECT treatments I placed my DW, Lynetta, in a nursing home specializing in Alzheimer’s yesterday. Lynetta always told me that she wanted to be “placed” whenever she didn’t recognize/remember us. While for the past 1.5 years she hasn’t recognized anyone, I wasn’t ready until an instance 2 weeks ago in which I found myself totally incapacitated and unable to take care of her. While I was in the hospital, I came to the conclusion that it was time to place Lynetta. While having a difficult time breathing and listening to the doctors tell my son the effect of having a tube in my throat to help me breathe has on me my son made a comment to the doctor I’ll probably never forget. “I’ve already lost my mother I don’t want to lose my father also”. That was enough for me.
When I started this journey I was bound and determined to take care of Lynetta at home, regardless of her desire. After all she isn’t in much of a position to argue with me over it. As she continued to deteriated, I convinced myself it was just another challenge and I would “fight” my way through it. While I’ve learned many new skills from her being incontinent, being bed ridden, and total dependent on me for food, water, etc. I haven’t been able to change the basic fact that “life needs to continue on” and I now realize that I have to adjust, for myself and my family.
As I’ve heard hear many times, Dementia/Alzheimer’s or FTD in Lynetta’s case will take one individuals life, we as care givers really need to remember that it’s up to us not to allow it to take more.
Oh aalferio, I’m so sorry to hear that you had to place you dear wife. We aren’t there yet, but from what everyone here says it is a very difficult decision. In your case it looks like the decision was made for you. Now you can be her caregiver by making sure she is taken care of at the home. God bless you.