My daughter Becky and I went to visit dh last night all I got was take me home and he let me hold his hand, he talked to Beck all the while we were there hardley looked at me, if I said something he would not listen at one time he asked her where is mom and he was looking right at me, broke my heart , sometimes we would sit and talk all the while I`m there. He is drinking and eating real well now after 2 months of having to force him to do that now he wants to eat constantly, this disease is so hard to deal with at times even with him in the nh I still go through alot of emotions. I will see him again tomorrow hope he knows who I am then, makes me so sad. thanks for letting me vent, love you all. Gail
"even with him in the nh I still go through a lot of emotions". How right you are marygail. I thought when Charlie was placed that things would be better right away. He would be taken care of , I could work and rest and have nice peaceful visits with him. Not. He was so angry the first week that all he did was hit out at me, the staff, anyone who went near him. He can't speak but when those arms get to flying there is no doubt that he is cussing you out. We are just finishing up his second week there and he is finally beginning to adjust, has quit most of his hitting and even gave me a kiss when I was there Thursday evening. My emotions are still on a roller coaster and I hope the darn thing stops soon. Hopefully when you see your husband again, it will be a better day. I know that is always what I hope as I walk through the door. Hang in there.
((Gail)) ((ehamilton)) (( all of you going through this))
In many MANY ways, having Lynn in the nursing home is so much harder than it was having him at home. The stress of constant care is of course less... but the breaking of the heart, the emotional war, is far greater. Rips me to pieces on those days when I go to leave that he begs me to stay or asked to go with me.
Yesterday he told me, "It is going to kill me to see you walk out that door." About killed me on the spot. *crying
I know he needs to be there. I am so grateful for the peace he has found, for the loving way he once again treats me. I know if he were home, it would go back to what it was, being hit and yelled at every day. But God help me, some times it is all I can do, not to pick him up and run for the closest exit! I miss him here with me.*sigh
I truly believe they adjust better than we do. I know it is a fact in our case. Try to be kind to yourself, during YOUR transition. And a few drugs wouldn't hurt *wink. Gentle hugs, Nikki
Yeah, that's the part I'm so not looking forward to....saying goodbye and walking out. Just a day or so ago, when I was leaving the hospital, she reached for my hand and said "take me...take me". It was all I could do to keep from crying as I walked out. It's a lot easier if they are asleep.
Yes, I agree with you, having them in the NF is sometimes harder than having them at home. I have been listening my DW telling me she was going home next Monday for three weeks now. She told me she is looking forward to resuming a normal life, keeping house, taking care of the dogs and cooking again. She doesn't even realize that she can even stand alone now, let alone walk or cook. I leave many nights with very mixed feelings. I have some things I would like to do and buy, but don't do them because I feel guilty about it. I know I shouldn't feel guilty but I do. I
Going home seems to be the general theme among all of her fellow residents at the NH, they all talk among themselves about going home. The other night I watched one of the ladies there with her long coat on, her purse on her arm with her belongings in a plastic bag knocking on the elevator door trying to go home. There are no visible buttons for the elevator in the Dementia Ward.
My daughter and I have talked about this and we have arrived at the conclusion that some of them never lose hope and that we shouldn't detroy that dream, it may be what keeps them going from day to day. We all know they will pass through this stage and become much worse.
yesterday my dh said he had to get home so he can get under the car and fix it, he is not a fixer, had to go to the bank with a couple of guys I have no idea who they are, needed to go and march in the parades, he forgot how to walk that is the hardest part for me, he marched alot of miles in parades, i guess he thinks he can still do that it is so heart wrenching when he says that,he would argue with me but listens to Becky i have a hard time answering him , daughter just told him your sick dad you can`t do that now. he argues with me , listens to her, as we were going into the home yesterday there was a lady trying to escape out the door, wanted to know where Hancock street was, poor thing had to fivit and tell her we didn`t know. yes it is so hard to leave them when they look at you with those eyes and say why not, here comes another fivit, dh always says i don`t want to live with him anymore, just pour that guilt on me honey, it`s so hard. sorry I`m venting again guess I`m going through a tough time today with him not regonizing me last night .
Yes, it is so hard. All we can do is tell ourselves we are taking the best care of them we can, by keeping them safe. They don't know it, but we do, and that has to be enough.
Just came back for nh. Charlie was pretty disoriented and pacing a lot. The aide asked if I would like to take him out to the patio but at this point in time I am afraid to take him outside for fear that he will think that I am bringing him home and I will have trouble getting him back inside. I agree that they probably adjust quicker and better than we do. I am ok while I am at work or having some quiet time here at home, but it breaks my heart each and every time that I walk out the door of the nursing home and leave him there and I don't think there has been a night that I have not climbed into my big lonely bed and cried myself to sleep. I try to go every day. Does it make it any easier not to go to often?
I go every day too. I can't imagine not seeing him every day. It is an excellent nursing home. The staff is wonderful and the place is beautiful... but it is still a nursing home, and depressing as hell to me.
It isn't all I thought it would be placing him. I thought I would be able to finally take that long long over due vacation safe in the knowledge that he was being well cared for. But even in the nursing home, he depends on me. Right now I feel I HAVE to go in every day as he still is not eating well on his own or for the nursing staff. When I was so sick with bronchitis and couldn't go in for 4 days he lost 5 pounds!!! He can't afford to lose ANYTHING! I can coax him to eat at least 75% of his meal plus 2 boosts. So, right now he needs that nutrition more than I need a break from seeing him there.
The vacation, and the weekend getaways, have been added to my “Some Day list”
Oh Nikki. I feel like we are living parallel lives. My dh is having trouble eating, especially dinner and it takes me a full hour to get some food into him. He needed his meds adjusted and was too sedated to keep his head up. I think having him in the nh is far harder some days than having him home. Of course, there isn't that 24/7 worry but when you relinquish control to others, you are always wondering how they are doing. In Ct (maybe everywhere) they are required to contact the family if anything happens(i.e. got a cut or fell, etc.) Two days ago, they called at 9:30 to say he fell out of the bed. He is blind and has very low hearing. I do not want him to loose any more weight and so I am very upset about his meds. I finally got to see the new Psychiatrist and was able to voice my concerns. The meds have, yet again changed slightly. It has been 3 weeks since the last meds change and it basically is adjusting the times the meds are given, not the dose. I know I am rambling. I need to start a new thread because I've had the most exasperating day and need to vent. Please bear with me. Thanks.
Kathryn I can't imagine what it must be like to be blind, confused and in a new place. You have worked so hard to get your husband to a safe place. You've done a good job-now give yourself a break.
Yes the leaving is bad . Some days my DW is ok but others it is BAD . The Aids at the assisted Living where she is are so good . They come get her about the time I am to leave and take her to the Ativities . Then I can go . It is hard . We in our 5th week now .
a while back, I had an aunt that suffered dementia and was in the NH in the town i live. my mom and her sister, both 50yr veteran nurses, as well as my aunts daughter who placed her. we all went to visit the aunt and found her sitting in her bed surrounded by all her stuffed animals. :) clutching one fav to her chest. she was awake but seemed so medicated her mouth was agape and drooling. trying to overlook it all my mom and everyone spoke to her like they always did without any response except an occasional half smile not knowing if that was a reflex or awareness. it was very difficult for us all -now that DH suffers the same cruel fate, i can see that the comments we made as we left the facility were a unanamous -why are we so adamant about keeping her in that state of living? the next week we had word thru my cousin that it seemed an accident had occurred somehow and way too much insulin was given to the aunt, and she passed on. the family accepted the accident as an untimely but accidental event that eliminated her/them of suffering more time in the dreaded end stage. it was indeed sad to witness- divvi
((Kathryn)) Vent away, we underdstand ((hugs)) Where Lynn is they are very stingy with medications. I had to fight hard to keep him on just the 75 mg of seroquel. It is harder being an advocate when they are no longer in your total care. I want to scream I know what he needs!!! But, I try, (notice I said try *wink), to remain calm so I can get my points across better.
Even though he is not in your home, you STILL have control of his care. Keep pushing for what you know your DH needs.
((Ribbit)) We understand and are here for you if you want to talk.
Maybe it's because I'm a nurse-but I remain my husband's very active advocate. I decide his activity level and his med regimen. The hospice nurse and facility director and I remain in constant touch and for us it is working. I also make my wishes known to all the aides, the activities director and anyone else I meet. Often I am met by someone outside the facility before I even open the door advising me of Bill's status. Now that I have most of my life back I am able to make clearer decisions about my husband's care.
((Bluedaze)) I think that is a very valid point. Now that I am not stressing with the 24/7 care, I too can make clearer decisions. I am very vocal about Lynn's needs as well. Where he is they also have monthly care plan meetings with the heads of staff and families.
He still has no desire to join in any activity, and at this point I feel no need to make his life miserable trying to force him. Every nurse and aide there, knows me by name. As soon as I get off the evelvator, someone always updates me about his day thus far. They also have his boost or mighty shake ready for me to bring down.
His first room mate died last month. Hard on me, but Lynn didn't seem to even notice. *sigh. He now has a new one who can't walk at all and Lynn dotes on him. Is actually very sweet to witness.