My DW delclines now include the notion that I don't belong in the house anymore and asked me when I was leaving? I convinced her to "let me stay" for a few days, but she may start talking about it again any minute. She goes back and forth over the past week with getting angry with me, out of the blue, to crying and asking me where I was and please don't ever leave me. Her agitation and confused have spiked off the scale in the space of one week.
She's been having trouble sleeping and gives me a hard time sleeping in our bed even when I sleep on the sofa. All happened in the space of one week when she forgot I was her husband.
My dear GG, it sounds like you need to talk to her doctor about meds adjustments. PLEASE don't think that she MEANS what she says.. or that she will remember it a day or two from now!!
My DW often tells me that she can’t stay here any longer and that she is leaving (does not know where she will go). I’ve finally learned if I tell her that we are married going on 45 years, she then tells me that it’s okay and she can stay.
don't sweat the small stuff,I get that about once a week,today she's leaving an going back to Florida,however we sold home in Fl 5 years ago,thinks she's driving,she hasn't driven in two years,she went so far as to call the police a year or so ago to try an have them throw me out,thursday night I was in the bathroom an when I came out she was GONE,I started looking for her an found her an her dog crossing a busy road at 10:30 pm(she also had my half of the dog for anyone that remembers) anyway I tried to get her into car an she refused so I called police an they stopped her an called an ambulance,took her to ER where they did a bunch of tests an then gave her a sleeping pill to calm her down for the rest of the night,yesterday I called the manager of Clare Bridge,she will be having an evaluation Monday an maybe admitted also,it just got too much for me,I did what I could but it was killing me slowly,I hope she forgives me
Don, please question the nurse at Clare Bridge extensively about everything from meals, toileting, bathing to laundry. Make an unannounced trip and see if you can question other visiting family members their opinion of the care. The one my husband is in is under investigation by the State for neglect. The manager was been fired and so far not been replaced, many of the staff have quit and they are now more short handed than they were before. About one half of what I was told at the interviews ever happened. I would complain and two weeks later the same problems were still happening. Because of his history of "aggression" no other facility nearby will take him. Recently I received a questionaire from Clare Bridge to grade them on their care, so I gave the a very poor in every category and let them know exactly which facility I was grading. I understand several other families did the same thing. So, hopefully, with that and the State looking over their shoulder, things will improve. This is hard enough without you having to help to do the work they are getting paid for and still feeling your spouse is not being taken care of properly. You have earned some peace and soon you will realize just how tired you really are. This is probably the hardest thing you will ever have to do; just hang in there.
Don - she'll forgive you, they usually come to an understanding and adjust to life in the facility. We're the ones left alone, worrying, adrift. But, being an AD CG can kill you, literally. It came to a point where my body simply rebelled. It was either he gets placed, we both get placed, or I'm institutionalized. Your DW would not want you to get sick from taking care of her. You did what you could, probably more than you should have. Most wait too long to place a LO, I know I did. It'll be alright. Blessings.
GG, it is so hard isn't it? You think you are prepared for what we know can happen next, but when it actually happens it is like being hit upside the head with a 2X4. I wasn't "allowed" to sleep in our room the last couple of years Lynn was home with me. He told me his mother did NOT allow girls in his room!! Acccck that was hard, but I did adjust. The first times are always the hardest... then after you hear it, deal with it day after day, somehow you just adjust and carry on....... Big hugs of understanding ((hugs))
Don, Lynn is in a wonderful nursing home. I couldn’t be happier with the care he is receiving. The staff is compassionate and gentle, angels on earth in my book. There are good ones out there!! I think we, myself included look at placing our loved ones in the wrong perspective.
I think we are too damn quick to beat ourselves up.
Maybe instead of hoping she will forgive you, which by the way she would!… perhaps we should ask ourselves, if our spouses were in their right mind, what would they want for us? Would they want us to kill ourselves caring for them? I know Lynn would have kicked me square in the ass if he knew all I did, how long I waited……….. It comes to the point where we have to love them enough to want what is best for THEM. Lynn is getting 24 hour a day skilled care, as hard as I tried… I just couldn’t do it any longer. He has at least 7 people each day doing the work I tried to do alone…. Stop and think about that…..
It was the hardest thing I have ever had to do……. And I am sure it is for everyone who must face this. But, it wont get any easier if you wait… Big hugs of understanding ((hugs))
well, I'm sitting at the computer, reading everyone's notes rather than going to bed because , my nighttime greeting was, 'Ok Mom, get a good nites sleep..." Off and on for te last week I've been mom again. today was really interesting, he got up and started talking about the war (WW2) about the bombings, and wanting to know who else in the family was in the war, etc. and tonite I'm his mother. ok. At my support group it was said that we should have our checking account s in only our name, without the name of DH. Now he has direct deposit of his SS and pension checks, so I don't know how that works, but.... that's what I was told. Everything should be in our name, in order that when the time comes, we don't lose everything.
I would think you need the two - one joint where his money is deposited and just yours. You can always move money from joint to yours. It depends on your state too. I think if it is a community property state it doesn't matter. But if they pass on before the next SS check drops I hear SS will want the last amount back.
chris r, We went to an Elder Law Attorney while DH was still aware. I have DPOA for medical and financial so on the advice of ELA I had the savings put in my name and the deed to the condo. DH's SS and retirement go to the joint account which I use to pay bills etc. I didn't do anyting about Medicaid, first I may never need it and second if things get that far I believe you have 30 days to set up Medicaid. I am hoping I won't need to use it but you never know. We also had our wills done. Whatever DH has comes to me. If I go first what I have will go in a Special Needs Trust for DH.
If you have DPOA just take it to your bank and they will run a copy for their records and you can put the savings in your name. My bank did it with no problem. If you don't have DPOA you might want to call an ELA and find out what your options are. I hope this helps you.
Thanks for the info, yes I have those dpoas and I have savings and investments in my name only, I didn't mean to go off track, Just had it in mind. Dick was still fighting WW2 today, and I called the day care to say he couldn't come, he had gone back to bed. Well, the director told me to tell him that the pianist would be there, and to tell him they really need him because he leads the singing. Well, of course, he thinks this is his job, and that he gets paid for it, so I told him what she had said. amazingly, he got out of bed, and went with me to the day care. We got there about 12:15, but they made a place for him for lunch, and the director came over and gave him a hug and thanked him for coming because they really needed him. What a wonderful place. And, when the bus dropped him off, he knew who I was, and that I was his wife. Happy day.
Good for you, Chris. That director sounds like a wonderful person to have in charge there. You are lucky with this facility -- or I should say, you made a very good choice!
Yesterday I had a woman out to eval dh for hospice. He flunked. H has to be losing weight which he is not. At some point I asked if he knew his name. He replied with first and last. Who am I? I asked. Mrs D. he replied. This could be either wife or mother of course. Asked my first name he was stymied!
Clare, my wife is on hospice, but has not been losing weight. She was put on after she was in the hospital with a viral pneumonia. After the pneumonia she returned to basically her previous condition. The nurse sees her every week and her weight has been stable. Today, she has been very shaky and unable to go out with me - a real change. The hospice nurse is coming over to see what is going on. This is a BIG help to me. I can't be objective in evaluating a member of my family, particularly my wife.
Clare, that is very odd. Hospice did NOT say my DH had to be losing weight. Recall, I called in two groups, First one said no right off the bat before she had sat in the chair because he walked in from going to the bathroom by himself. Bang! Bang! Two problems. I called another one for Monday, and he was accepted, almost as quickly. Neither one mentioned weight. You can also call the Hospice Administrator and discuss in detail what is going on...and ask HER if losing weight is part of the criteria. Some say Alz. Medications cause patients to put on weight. Stay on this.
Clare, I agree with Nancy. Call a second one. Losing weight was not mentioned here either. My Mom was walking on a walker when they came. Paul was sitting in a chair. SHe talked to him and he talked back to her. She did not see him walk - did not have him get out of the chair. She mainly asked me questions. With Paul she was dubious about admitting him to the program but because she was a personal friend of our pcp - she did so for 90 days. 2 weeks later he passed. Passing this quickly does not seem to be the norm for most dementia patients. Paul had Parkenism with AD and VD.
Clare, your pcp can contact Hospice for you and tell them that he is ready for Hospice. Nancy and Lois are right...if there is another Hospice in your city, have your doctor contact them for you.
My husband also failed the hospice evaluation in January. Not quite ready. His doctor thought it was too early too, but thought that getting an evaluation was a good idea. I was told I was free to call back as things changed.
Losing weight IS one criteria, but is not required. It was, however, one of the ones she told me about because he had some of the criteria for "debility" but not others. He needs one more BIG symptom to be accepted. Incontinence is one of the symptoms as well, but also is not required. He is beginning to "shuffle" and if his walking continues to get worse, that will probably be the additional symptom.
They were going for "debility" rather than "dementia" because the requirements for dementia are so much stricter. And they can use debility first and go for dementia later as the symptoms change keeping the client on the books until the end instead of starting and stopping.
You can ask to see the lists of symptoms, by the way. One of the local hospice organizations shares them openly and I might even have copies of them somewhere in the house.
I just contacted the second one - thanks for nudging me to do so. Last night he fell again when we were trying to get hi to hold on to his walker. Called 911 and three burly firemen got him to the bed. This morning he cannot get out of bed. My son reminded me to check for a uti, which I did this morning, and yes, he has one! So now the doctor has calls in to respond to the VNA to recommend him for hospice, to send a prescription for cipro to the pharmacy, and to send medical records to a nursing home. Meanwhile, he's dozing upstairs, peaceful as long as I don't try to move him.