Patsy, I understand completely! At our very first meeting I told them that my husband is NOT coming here just to die, he is coming here to get the BEST possible care!!
I have no experience with a VA contract. I didn't even know there was such a thing. I was given only two options, put him in the local VA (they call it the Soldiers Home) or a local nursing home. If he went to a non affiliated nursing home, they would not pay for any of his care, oversee his care or fill his prescriptions. I am guessing it is different state to state. Maybe instead of going to the clinic you could set up an appointment with your local Veterans Affairs office.
Patsy, Nikki of course is our expert on how to get what you want/need for your husband and gives wise, practical advice. I would add to her comments that you should send a letter to the DON with a copy to the NH Director requesting a meeting and an outline of the topics you want to discuss. I find when letters are sent they tend to take it more seriously (they know they are being documented and it can be used against them). Take someone with you who you can trust and have them take notes on what actions were committed to and by whom and the timeline. Then type them up and send the notes to the DON memorializing the commitments.
I know this is extra work, but it is a very effective way to get their attention and the help your husband needs.
Bill is in a VA contracted NH; only two in this area.
The VA pays for a semi-private room and I pay a minimal extra amount each month so he can have a private room.
VA still provides meds but no other services other than the amount they pay under the contract.
Bill is a 27 year retired vet with 100% disability.
Stayed home today to make phone calls that I've put off.
Talked to DON. VA was correct. He's no longer under a VA doctor. Strictly NH doctor.
DON and I decided we'd have a couple of staff members assist him with walking. One helping with balance; the other following behind with wheelchair and oxygen. Then, we'll continue trying to get orders from NH doc for the "travel" oxygen.
At the moment, I'm satisfied. I just wanted him to be somewhat active and not live each day tied to the oxygen. I think it will also help his mental attitude because he complains that all he does is sit in the room.
Maybe this is the start to the answer.
Surely hope so. If not, will keep bugging them.
Bill is considered a "fall risk". They have made a lot of effort to convince him that he cannot get up without assistance. That's good. But, now, I hope that Bill will not resist the walking exercise for fear of falling.
We try to address our spouses concerns but I've found that those concerns can easily change from day to day due to ALZ.
I agree with Nikki one hundred percent. I didn't put him in care so we could wait for him to die.
Well, yesterday was a new milestone for us in this horrible disease. For the first time since being diagnosed, Bill didn't know who I was. He recognized me in a sense, but didn't know my name. He thought I was Judy (his first wife's name). Ouch! So very painful. I kept it together in front of him, but after I got back home, I cried the whole night. Since he was placed a couple of months ago, his cognitive function seems to be declining rapidly. Is this normal?
It still totally amazes me how much something like that can cut so deep when experienced. I mean, logically we know its coming, but when it happens, wow! As it has often been mentioned in the various message boards on this website, what the head knows, the heart just can't accept.
At least he seems... content now. I can't say happy, since I'm pretty sure that is an emotion that he is no longer able to experience. But, on the flip side, I don't think he can feel sadness either. Frustration, yes, but not sadness. So, I guess I can take comfort in that.
It is normal for someone to do worse after placement. One reason is the change in environment, they've been able to hand on before because everything was familiar. The other is that we place someone because they are doing worse and we are just seeing a continuation of the decline that made use place them in the first place.
Some times residents due better due to a more rigid routine.
Bill's made a turn for the worse the last two or three days.
Back to insisting that he come home. He doesn't understand why he can't live in a house he bought and paid for. He knows many people are living here with me because someone from NH brought him to the house one day and it was full of strange people.
People are coming into his NH room each night and having wild parties.
A NH patient, with a car, took him to our bank and he found there's zero dollars in the account.
I'm his older sister...no, I'm his wife but something happened to our marriage.
Cursed at an aide yesterday. This hasn't happened before.
He refuses to eat. Dietician added a high protein/high calorie drink for morning and evening meals.
He's very angry with brief calm periods.
I agreed to let the NH move him closer to the nurses station because he's a fall risk. As a result of more activity and stimulation near the nurse's station, I believe this extra stimuli has something to do with this "break".
It's physically safer for him but not so sure the extra activity surrounding his room, etc. is beneficial for his ALZ.
Seems I can't stop questioning the decisions I make.
Didn't go in today but checked in with NH. He's much calmer and has not caused any problems today.
It's been four months and I seldom miss a day visiting. Maybe I'm adding to agitation????
It sounds to me that the disease is taking its inevitable toll, and there's nothing you can do except take care of yourself with rest and regular good meals to give you the stamina to handle the rest of the journey. There will be great demands on your energy. I urge you to conserve your energy to see it through. Arms around.
Came home from visit with him mentally and physically exhausted. He's still cursing and swearing about coming home. He's always been so independent. Always became very angry and determined when challenged. ALZ has not improved that personality trait.
I know I must start taking care of myself; otherwise, I'm not going to make it. It's so hard to let go. It's early so think I'm still in the process of learning to accept the things I cannot change.
The two things, determination and effort, that I've used to battle past obstacles do not work in the fight against ALZ.
paj, You sound so much like me. My husband has been in Memory Care for almost two months. I don't think I can do this - I know I can't have him at home, but I can't begin to imagine how I'm going to be okay. I cry constantly, I still live like a zombie, my house looks like a deranged 5 year old lives here. I've also wondered if my visits aggravate him further, but the staff doesn't seem to think so. Thank God they love him there, on his good days, he is a sweetheart. As his bad days become more prominent, hopefully they will have good feelings toward him.
I have nothing really to add to the conversation, just wanted to jump on here and tell you how much I appreciate all of you. You are truly the only people who understand what I'm going through. This perpetual grief.
joni1957, know that I am praying for you. You can do this and you are. What you are experiencing now is the worst of it at least that was my experience. The first 3 months were horrible especially the sense of guilt that I had and constantly questioning myself if I did the right thing. As time went on the thoughts in my head settled down somewhat and I was able to gain some control over the constant negative ramblings in my head. It has been 15 months for me. I spent the afternoon with him yesterday and brought him back to the house and each time I do this I am reminded there is no way I could have him home. He needs one on one attention. Even to try to do this for a few hours is exhausting. Feel your pain and cry as much as you need to which is what needs to be done. My husband spends most of the day pacing. His speech is increasingly nonsensical but I know I am blessed because he has not become belligerent and he still knows me. Yes this is the only place I have found people who truly get it.
I'm isolating myself. The only people I talk to are my sister and daughter.
When I get home, I'm so tired that all I do is sit, nap and watch bad TV. Don't want to do anything or be around anyone.
Get up in the morning, eat a bite of breakfast, go to NH, stay two or three hours, drive home, eat a bite, sit down with the TV, go to bed at 8:00 or 9:00, read for an hour or so and wake up to a day where it starts all over again.
Have always been active and involved in different projects but too tired to think beyond each day.
Yes, I'm living like a zombie but have made one small step...I'm no longer crying all the time. Maybe I've just gone numb.
My hopes of bringing Bill home, even for an hour, are gone. I'd never get him back to the NH without calling 911 again.
As if every day life wasn't challenging enough for him....he now has a kidney stone. Excruciating pain. They say it is 2-3 mm and it should pass. He has had them before but the last one was about 8 years ago. It was so large it had to be surgically removed. If you are a praying person, please whisper one for him. This needs to be resolved ASAP! Heartbreaking and So! Not! Fair!!!
My DH also had issues with Kidney stones. My heart goes out to you both. Praying it passes soon. Its so hard on him and also for you as you watch over him. One of the kidney stones DH had 24 years probably saved his life. When they did the x-ray to see how big it was they discovered his bladder cancer. The blasted the stone to small pieces and 2 months later removed his bladder and built him a "neobladder" by diverting a piece of large intestine .
My wife has had a fever for a week now. We can't figure out what it might be but her bloodwork came back so poorly that the doctor called me to talk about the palliative care which in a nutshell is the quality of life of dying patients. She stopped eating and drank only fluids given to her. She does not look good and I have an appointment to see the funeral home director tomorrow where it's finally time to make those arrangements and where the director told me on the phone it was good to be early with these things. So my very late is actually early.
The doctor at the NH is the only one of the whole staff who talks about Dianne in her actual state. Everyone else there lives in a fantasy world shared by most of her well wishers. I won't miss that aspect of her getting support. She is starting to shut down and I think she has a chance of slipping away quietly where the body doesn't go because of a specific affliction - it goes because it tires.
I just got a call from the nurse though. Dianne woke up late this afternoon hungry and 'talking'. She ate her whole dinner. First solid food in a couple of days. That's really good. But as the doctor and I discussed there is no humane logic in trying to keep her going and the doctor did one of those saying things without saying them kind of things which made it clear he wouldn't project out more than a couple of months. Project what? I wanted to ask. Project out a rocket to the moon? I know she's dying. I thanked him for calling me. That's a very hard part of his job.
The lady at the funeral home said something interesting. She said they would issue all the death certificates, notify her government pension, do the legal notifications including our bills, apply for any support pension I might get, and apply for her death benefit from the government. They immediatly went into the "we are your family here to help you through this tone" and it switched on beautifully when she could hear we are going ahead. No service. No viewing. And no one there but me. It's just me and her and I do this alone.
I project out a few months that my family-in-law problems, a collection of people so outrageously strange as to defy description, will all too soon be self resolved.
My wife had a fantastic life. I know because I was there. I know I speak for her when I say we have no regrets worth mentioning. I include her in my conversations now with enjoyment and I know that because I have now been out with three very different groups who all have known me for decades. All of them said I was obviously so much better. Yes. I can feel that. I still need to invent a new life but I've made the parts I allowed myself mine and I've enjoyed those parts with a whole heart for some time.
It's like a lighting effect or like impressionism in painting. I'll still be missing you is the effect and the impression is almost one of comfort like an old friend who I've known for over four years now. It's part of what I am now and I accept that with open arms as truth I can live with. But I'm not a charlatan. I've gotten parts done without waiting in a duality that helped more than it strained to keep up. Soon the two parts will collide into one and I will learn the outcome of my experiments.
If any of this sounds strange it won't to Dianne. She knew how strange I am. She would have bet on what I was up to. Let it go kiddo. I'm on firm ground and I've got you.
Hi Wolf, I just saw your post about the change in Dianne's condition. Your description of her life is beautiful. Not many people can say that they had a fantastic life and not many couples can say that they have no regrets worth mentioning. I wish you strength during this time, but I can see that you have plenty of that already.
Praying that your lovely Dianne will go quietly....no more suffering for her, and you will be at peace knowing that you did your best in caring for her through it all. You two clearly had something very special....beyond love; knowing this will give you strength and get you both through this time.
Nikki, thanks for asking. His pain is much better controlled now. His pain med was changed from every 8 hrs PRN to every 4. They are being very liberal with it to try to stay ahead of the pain. He didn't know to ask for it when it was PRN (as needed). It is a mild narcotic because I was afraid of anything very strong. He is much more comfortable now. No sign of the stone yet but I know they are not as diligent as I am to strain his urine. Happy to hear that Lynn is more comfortable too. The holding the nose trick is one we used to get patients to open their mouths for oral care in the critical care setting. Brought back memories.
I made the lady at the funeral home bawl her eyes out. When she heard my story it was clear something deep was inside her and it didn't take too long to spot deeply seated guilt. It turns out she had married someone in a second marriage who already had three children and when he became abusive she left them. Later she found out he had dementia and he is now in a home in a similar state to my wife but she is frozen out of that family.
When we were done I told her she could not be held responsible for how unknown events would unfold and that she was wrongly consumed by guilt. She broke right down and I expected her to. There was a handy box of tissues for her. I explained in more detail as she cried that I knew for certain many men become abusive because of dementia whatever their character before and I pushed her to go somewhere new, sit somewhere she usually doesn't and learn that she left an abusive relationship and was never allowed to make the choice of staying if she had known. She was literally shaking because no one had ever said these things to her.
I know. People are such dears aren't they. I really should have been given five cents off that bill but I don't do it for the money. I do it because I answer the call when I hear it just like a Phillips screwdriver does when a tool is called for. What I've been given is priceless which is that sometimes I can see what's there. And sometimes I can't find my way out of a wet paper bag. There's never any point in self aggrandizement when you can see the hand that's holding the puppet.
Another side of that story is I went to make funeral arrangements for Dianne and while doing that I looked into someone else. And what's priceless about that? This will always be my experience of this day. It takes conviction to engage in the arrogance of explaining to a stranger what is really going on in their life. Actually, maybe it just takes arrogance. But I'm ok and I feel like me and I'm happening to it even on such a day and that is priceless.
Thanks guys, for the support. I no longer need to make 'arrangements' because I've made them.
Wolf, Not much good comes from this disease. Empathy is one of them though. We have all been so transformed by this. Our dear ones...not in a good way. But, we can use our experience in positive ways because we "get" so much more having been thrust into this waging war. I am thankful that you were able to help someone else during a very sad and unpleasant (but necessary) time in your life. You seem very insightful and she was one blessed lady for having had this encounter with you.
Guilt must be one, if not the, worst of psychic pains. What you did for that poor woman, Wolf, was give her a hand up out of the dark abyss of guilt. Don't go all wonky, but it was a noble and kind thing to do. You may have started her on the road to recovery of sorts because we all know that guilt and depression skip through our brains hand in hand.
Such generosity of spirit calls for ice cream and whatever those pastry things you people up north eat (beaver tails?? - gak, what a name). And, thank you for giving me the opportunity to use the phrase "you people" in a sentence that isn't incendiary.
Marche, I'll be there tomorrow to sign papers. If she's smiling at me then she took something in and if she's reserved it never happened.
One thing about Canada is we don't care what people say about us. Stephen Colbert calls us beaver stroking ice holes and we just don't care. Nobody calls Canadians worse than Canadians do and that's a fact because nobody thinks about Canada let alone talks about it. Which is perfect.
To those who have your loved one placed and they are still walking, how are you handling the holidays. I am taking mine to Thanksgiving dinner with the family and the same for Christmas Eve. Don't know what to do for Christmas Day as it is usually spent quietly. I have brought him home many times usually for a few hours and find that I can find almost nothing that holds his attention. He just wants to "walk" I have tried looking at old photo albums but had a difficult time vision wise and could not identify himself and could not seem to engage in the memories. Movies no longer keep his attention either. Just wondering.
I ,for one will not take my DH out for the holidays. I do not want to add to the confusion of taking him BACK and leaving him again... At this point I would just like to let the holidays slide by and not even have to deal with them. I guess I am just bitter towards anything that reminds me of the life we have lost and the thoughts of a future without him by my side....
I will not be able to see my DH on Thanksgiving a Day. He is in a Geri psych for med management . It is a 3 hr round trip. I will be home cooking for my family.Sadly, he would not even understand if I did try to celebrate a holiday With him anymore.
I, too, wish I could just fast forward through the holidays. Between Thanksgiving and Christmas he will be moving into A Memory Care ALF near home( hopefully if all goes well) Then I will be able to spend some time there at Christmas.
First holiday season without him at home. Dreading it!
Mr. Guilt will send me to lunch at the NH to feed him and visit for a few hours. Afterwards I will come home and open up a can of chicken noodle soup. Can't wait, sounds like so much fun! I have brought him home in the past and it was a miserable time for all. My DD and granddaughters usually call and invite me to go black Friday shopping at midnight. Hopefully they will this year. I am a night owl so I love it. The giddiness of teenagers brings me joy. Overall the holidays make me sad so I'm with some of you in wishing I could just fast forward through to January, but I do hope that all of you find a little bit of a bright spot as we trudge along. ((Hugs for all my cyber friends)).
I too wish I could fast forward over the holidays. I hate going through the motions. To top it off my brother and wife are flying in and of course coming to see us is his vacation. They will not be staying with me but for me it is yet another member of my family who has no idea what I am going through. Their conversations are usually about how wonderful their daughter is doing, the new house they are building and the trips they are taking. Whether I take him out depends a lot on the weather. Two days ago we got 14 inches of snow.
This is my first time writing as a member of the community with spouse in residence. He was sent emergently to the hospital and when he was discharged had to into a nursing and rehab center for treatment. He will now be staying there permanently. I have been going through some of the feelings Joan did for the past month and a half he's been in there and still coming to terms with the situation.
As for the holidays, this has been a source of pain for me, worrying about what I was going to do about them. My final decision is he will be staying there and I will be joining him for a thanksgiving lunch and afterwards going to my daughter's for her annual dinner. He can't walk and would need to be in a wheelchair and is not yet accustomed to being in the home. I worry if I took him out there would be all kinds of questions about why he couldn't go home. He's already doing that to me. Yesterday was a heck of a day with him asking to call me and me dropping what I was doing to rush over there. When i arrived he was the loudest person on the floor, which is no easy feat in a locked dementia unit. He was yelling about people who were going to hurt me and worrying about our safety. He was completely paranoid. Previous to this he has been pleasant and humorous to all staff and very nice to the patients. Everyone seemed to like him and told me how funny he is. He doesn't have a UTI; I don't know what prompted this. I have a feeling he didn't get his seroquel but I'm not sure about that.
Anyway, here I am, finally among all of you after almost 9-10 years of caregiving. I feel I'm still his caregiver, going there every day but not really doing their duties, just helping him with a meal occasionally. Maybe I'm going there too often? Should he have a break from me? I thought I was helping him get used to living there. I don't, and can't, stay there for the whole day, only 2-3 hours. I don't know how some of you can stay the whole day. I'm wiped out with the amount of time I do stay there.
As for Thanksgiving, I pray I'm doing the right thing going there for lunch. I hope he won't give me a hard time when I leave afterward. If any of you have ideas for me, I welcome them.
I find it sad so many of us would like to fast forward through the holidays. I am so there too!
I do not like rushing life away, however, the upcoming season seems particularly hard. This will be the first year that I will simply go to the facility my husband is in and have lunch with him - lunch is their big meal of the day. I will also attend the Christmas celebration lunch with turkey etc the facility will have December 17.
I kept up trying to take him out to enjoy special days, grand daughters birthdays etc. and finally realized I was doing that for me and not him. He got confused and more agitated as the time went on and if I did not pick up on the cues, he announced, "It is time to get back. I am heading out now to walk there." Quick on with our coats and into the car.
I will spend Christmas evening/dinner alone. Former friends are gone and I do not have the energy to invite anyone to join me. Fingers crossed I get an invitation to dinner as there is still time, however, I know the chances of that are slim for this year. That will be okay. I have two cats now and we will have a cozy evening.
I'm going to my husband's LTC facility for Thanksgiving. We could either eat in the main dining room, which the nurse described as "a zoo," or in the dining rom of his unit. I made reservations for the unit. She said that some of the men go home for dinner but many stay in the unit and there will be other wives there. It will be OK. My husband can eat on his own and is very social, and he'll probably recognize it as a special occasion.
Bev, I visit my husband almost every day but rarely stay for more than an hour and a half. I never stay while he eats (he does not need help with that). I don't really see myself as a caregiver anymore. Sometimes I shave him or trim his moustache but mostly, I just socialize. I try to give him a change of scene by taking him for a short ride or to the recreation room or just to the lobby. My husband does not seem to remember our home although sometimes he asks why he can't go with me. When I leave, I do so with little fanfare. I put my jacket (and if I have it, his laundry) next to the door in advance and make up an excuse - I have to use the bathroom, wash my hair, take a shower, pick up something at the store. I make it sound like I'll be back shortly. Sometimes I time my visit so that I'm leaving when he is going into supper. I lead him to the table and say that I have to wash my hands, and off I go. His memory is so bad that he forgets. I learned this strategy from other people on this website and refined it to meet my needs. I don't know if it would work with your husband.
Bev...your first paragraph described our situation to a tee. We are even on the same time table as it is almost 1 1/2 months since his rehab/turned permanent placement. I am just beginning to think about what I will do about the holidays. Just can't decide yet. I go daily and stay for about 2-2 1/2 hours in the evenings. I work during the days. I feed him his supper meal. I also may shave him and we go into the lobby and sit. He likes the "pretty furniture" there. Just gets him out of his room and away from the nursing station for a bit. When it was warm we sat outside on the large front porch but too cold for that now! I brush his teeth every time I am there. Not sure how often they do it and it is something that he was always meticulous about. I am thinking that he will do better there with just me than bringing him home where there will be a lot of commotion. 4 kids under age 4 is only a pleasure to him for about 5 minutes. Then he is on sensory overload and uncomfortable.
I too will be joining Lynn at the facility for Thanksgiving. Lunch is the big dinner there too, which works out well as that is the usual time I am there every day. It took a couple of years, but eventually my family learned if they kept having family gatherings during the time I visit with Lynn, I would not go to them. I am lucky that they like me enough that they changed the time of our festivities to when I can come :)
At first I didn't bring Lynn home for holidays for many of the reasons you all have stated. Mainly he would want to stay home and it would have broken my heart and only confused and frustrated him. Now that wouldn't be a problem for him, but I don't bring him home because I know it will be ME crying and wanting to keep him home. If he ever comes through that front door again, I am not letting him leave! So, best if I don't put myself in that situation.
Like you Myrtle I too choose to have our holidays meals in his regular dinning room. It is indeed a zoo in the formal dinning room! Many family members only come for the holidays so the place is overrun with visitors. Which is fantastic! At least some of these poor souls get to see family occasionally.
Christmas use to break my heart. It was painful no matter where I was or who I was with. Not just because of Lynn, but also because of the loss of some of my beloved family members...the magic of Christmas died with them. What eventually helped me was trying to take the focus off of my pain and trying to spread a bit of joy to others. This will be my 3rd Christmas playing Santa for the residents on Lynn's floor. With the financial help of his sister, I shop all year long picking up little gifts I think each resident might enjoy and then the kids and I pass them out on Christmas morning.
So often I hear "but they don't remember".... so what? It doesn't mean they don't matter! All they have are moments..... how wonderful it would be to try to make those moments happy ones. In trying to bring these sweet souls some moments of happiness, it affected me deeply.. and Christmas doesn't hurt as much as it once did.
Bev, just as each Alzheimer's patient is unique, so are their spouses. There is no set rule on how much one should visit, it is all about how YOU personally feel. I have remarked before that people will often have the gall to tell me I spend too much time with Lynn. It really, really irritates me! I can almost guarantee that these same people would never dream of telling a spouse who didn't visit often, that they didn't spend enough time with their spouse. I am not sure why there is a double standard there? Maybe it makes them feel better about not spending more time with their LO? Whatever the reason, it IS what is best for me. And that is all any of us can do, what it best for us individually. Whatever you decide, it will be the right choice ((Hugs))
My husband, who has been in the psych ward now 2 months has developed a toothache. I suspected a problem in the summer when he when still home and took him to see our dentist but he didn't cooperate much and they could only do an oral inspection. So now he has a more serious issue and I was instructed to find a dentist who would put him under to do the dental work. Well....no one will do it. I got the name of a dentist who does put people under but he would not put someone under who has dementia. Has anyone else encountered this??? What are we to do now? All the nurses are quite shocked as am I. Surely someone else with dementia has had dental issues and how did they get around it.
Thank you so much for your comments, Myrtle, Aunt B and Nikki.
Nikki, I agree that no one should tell you how much time you should spend with your loved one. If you wish to stay there all day, then that's what you should do. Maybe because mine hasn't been in the nursing home as long as Lynn has and I get so emotional when I get home, feeling guilty still (even though I know I have nothing to feel guilty about), that the next day I'm completely wiped out, unable to do hardly anything. I can hardly talk about him without tearing up. When I think about him I picture him all alone and can't stand that picture. I know he really isn't alone; they're really wonderful there. It's just me and I know it. I've been feeling physically ill since all this has happened, with him almost dying, then the transfer to the home, the quietness of our home with him gone, etc. I saw my doctor yesterday and he in no uncertain terms told me I must see a counselor to talk this out. I promised him I would. I realize I'm depressed and need help.
I went out to lunch with old friends today who then came with me to visit my husband, since they are old school friends of his. We all had a very nice visit with him. When they left, I stayed, but when he began to ask those same questions of going home, I gently answered some of them and quietly left.
I have followed the suggestion of cutting down on the visits because of what it is doing to me. I've decided to take a little better care of myself or I'm not going to make it through this, and I have to be here for him and my family. I'm very, very surprised at myself for the way I'm taking this. I have tried so hard to understand dementia over all these years, tried so hard to be patient and understanding of him, kept my feelings to myself (which wasn't always easy), and here I am now, going through depression when things actually should be a little easier. Unbelievable!
Bev, I too am struggling with visits and come home wiped out and emotionally in a turmoil. When I go he usually starts off saying "get me out of here." He has been there for over a year. When he says this I completely fall apart knowing this is impossible. I know he will forget soon but it sets the tone for the visits. I do not always get this way and sometimes I come home emotionally stable. Even after a year I still feel bad that I placed him-- it is not so much guilt--it is just that I feel bad because I know I have done my best but somehow it never seems enough. Bev, I have given up trying to understand this disease. Understanding it will not help or stop it. Sometimes I think that by understanding it I can have better control and that is just not the case. On bad days I tell myself he is clean, fed, and has people who talk to him. If he were here it would all be up to me again.
abauche, so sorry to hear about your husbands dental issues. Poor bugger!! Lynn had a car accident that resulted in him losing all of his teeth, so we have never had to have teeth repaired or removed since diagnoses. However, there is a gentleman at the facility who just brought his wife to an oral surgeon to remove four of her lower teeth. The reason she has dementia is from anesthesia, so I can understand them not wanting to use it on an already compromised patient. What they ended up doing was giving her a sedative, this allowed her to relax enough to have them removed. Not a great solution, but there just has to be ways to help these poor people. What about "gas", do they even do that anymore? Perhaps call primary doctor or neurologist and see if they know a better option. I hope you are able to find a solution.
Bev, I got choked up reading your reply....the first 2 years after placing Lynn were much the same for me. I was in full blown mourning, though I didn't recognize it at first. It is a whole complex combination of raw emotions we are having to cope with all at once... from the loss of having them home with us, the guilt (misplaced but real nonetheless) the utter sadness at their fate, and ours. Just so so heartbreaking!!
My doctor told me if I wasn't depressed, THEN he would be worried about me. Be gentle with yourself dear Bev, it is an impossible situation we find ourselves in. I can tell from your posts that you still care deeply for your husband and want to be there for him. Just remember, you matter too! Please do follow your doctors advice, it does help a great deal to have someone just listen to us. Wishing you a measure of comfort Bev ((Hugs))
So strange how the mind works. With my husband in LTC now six months now, I'm gradually giving away the things I know he won't use again, but many things are too hard to part with. Among these items are the mugs that I bought for him years ago that have the insignia of the US Air Force on them. I don't even know if he liked them -- although he was career military, he was never the gung ho type -- but he always had his morning coffee in an USAF mug and I had mine in a cat mug. These mugs are crowding our dish cupboard but I haven't had the heart to give them away. But yesterday, I had the idea of taking one and putting it on the shelf over his bed with a seasonal decoration in it. With that decision made, I was able to put the remaining mugs in a box for charity. If I can fool myself like this when it comes to giving away other items, maybe I can get this house cleaned out.
As far as the Thanksgiving holiday goes, I'm ordering special meals from a local restaurant for Bill and myself. We'll eat in his room with the door shut (hopefully for some quiet time away from other residents).
I'll spend two or three hours with him, then drop by my niece's house, where other family members are gathering, have a cup of coffee, piece of pie and a short visit.
Then, home again.
Considering our present circumstance, I would still like to take this opportunity to wish everyone the best Thanksgiving possible.
A "thank you" to each and every one for the insight and comfort I've gained from this site.
I'll be joining my husband for a big lunch at his memory care center. I'm glad for that - I don't have the energy to carry on conversations with people who don't understand what I'm going through. Last week I had a bit of a breakdown, and the administrator at the memory care gave me the name of a therapist who specializes in caregivers of dementia sufferers. I had a session with her, and I told her how I've been living. She seemed to think it was fine, that during this transition I should live however I feel like living. She said it is okay for me to sleep 18 hours a day if I want. She did tell me to try not visiting my husband every day, so I took a day off this week and slept.
I want to wish you all a great Thanksgiving, however painful it may be. I'll be thinking of all of you and praying for you.
Change of plans. I am going to have the Thanksgiving meal with him tomorrow at the "home". We are having our meal on Friday and I have decided to bring him home for it. He is missing the grandkids so badly. I will probably just have him here for 2-3 hours and then take him back. I think that will be about his limit with all the commotion. He will really enjoy the kiddos and I want to spare him any embaracement/humiliation of accidents. He should be able to potty before we leave and be OK until we get him back. Fingers crossed for a really enjoyable time. My very best wishes to all of you!
Aunt B: So glad you're able to take your husband out for a few hours. Wish I could do the same but worry about getting Bill back to NH without an episode. Hope you and he have a pleasant 2-3 hours with family.
Joni: I keep thinking of Joan's blogs..."In our own time and in our own way".
I've tried taking a day off but find that all I do is sit, watch bad TV, wonder how he's doing, etc. and the day drags on. So, for now, it's just as well that I visit each day. Think it's better for him and definitely better for me.
I know that I must eventually wean myself from these daily visits but "In our own time. In our own way".
Over the river and thru the woods, to Timmy's new home I go. The car knows the way, to go on this day. We'll still celebrate and pray, hey! Thankful for all you guys today! Off I go.
paj, After placement the thought of bringing him crossed my mind numerous times. Still does occasionally. I now know it was feeling guilty in thinking I had placed him too soon and that the caregivers were not providing the level of care that I was. I would relive the years before placement and realize why I placed him. I simply could not continue because I had passed my breaking point. I'm sure others have brought their loved one back home and were happy they did. Hope those good friends will post with some advice for you. For me it took a long time to accept the placement. I just try to take it one day at time and I do understand how you are feeling. Sending you a ((Hug))
He just seems so vulnerable. He's 87 and it seems so wrong to let him live out his final years in the NH. They're good to him and I have no serious problems with the facility. But, I'm sure you're right about guilt. And, some selfishness on my part because I don't like being alone.
Bill has not slipped into the late or final stages of the disease and appears to have some ability to reason and understand compared to the other patients in the dementia unit. I'd ask them to move him to the other area of the NH but he's had four necessary moves in the last five months and I don't want to move him again. The majority of the time, he seems reasonably comfortable and secure in his current room. So, why do I think moving him home would be an improvement for either of us?
Yesterday was a particularly bad day for the unit. It seems that when one patient has an episode, that episode effects many of the other residents who add to "over the top" behavior. I finally took Bill to another area of the NH just to get him away from all the agitation and distraction. It wasn't a dangerous situation, just chaotic. I don't fault the aides or nurses. They handled the situation as well as could be expected.
He's been encouraged by the staff to participate in activities but chooses to sit in his room most of the day waiting for me to visit. I try to keep him somewhat distracted with massages, personal grooming, items and treats from home, placing him in his wheelchair and pushing him throughout the facility. When the weather allows, I take him outside.
He's becoming almost childlike; no more tempers, rages, angers. I realize they can easily return.
I'm so tempted at times to make arrangement for him to come home but then, like you, I recall how it was before. I'm afraid that if I bring him home, he'll return to the same resisting, challenging Bill. I'm certain that he would not let me have control of his well-being as he allows them to do at NH.
Guess it was only another of those days when the guilt and "did I place him too soon" return.
Bill is not going to change his behavior so if you want him to succeed in this LTC residence, you'll either have to change your behavior or change something else in his environment. When it come to group activities, it sounds like it's the staff vs. Bill, with you supporting Bill. Maybe you should shift to a more neutral position. I've noticed that several spouses in my husband's dementia unit visit during activity time and help their resident spouses with the activities. Why don't you try timing your visits so that you can accompany Bill to the activity room? Even if he does not want to join in, you and he can watch and comment on what's going on. After watching the activities for a while, you could reward him by taking him for a walk, etc. As far as bringing him home, if I were you I would ask myself what caused you to admit him in the first place and what new system you would have in place at home that would solve the previous problem.
I completely sympathize with your loneliness and your sadness about the unfairness of Bill's living out his final years in a nursing home.
Thank you so much Myrtle you have helped me as well. I know exactly how paj feels but I have quit going to LTC except to take Kevan for coffee in the cafe. I do bring him home but that is working out fine for now. The loneliness is the worst thing for me. I get so lonesome that I just don't know what to do. I also get really angry at our situation. I guess this comes with th territory of being an AD spouse.