paj, I hope you had a "good" visit with Bill. Walking into an LTC facility and never knowing what you will encounter takes an emotional toll on us. For me, leaving after an "okay" visit (no longer have any "good" visits) leaves me feeling guilty. Leaving after a "bad" visit makes me depressed. I think I will always wonder if I made the right decision in placement but I knew that one of us had to go someplace! That is the devastating force of this disease. We can't win, just hang on. I sincerely hope things will settle down for you and you can have some normalcy in your life. All caregivers deserve it.
AliM, you have a good way of putting things that always seem to be my exact feelings. Yesterday I had what you describe as a "good" visit yet the guilt lifted it's ugly head and I ended up crying all the way home. I totally agree that we will always wonder if we made the right decision. I feel like a widow but I am not. I am somewhere in between and for the most part do not know who or what I am. He continually asks me why he has to stay there and it breaks my heart. It seems when I do not go for a few days I seem to gain my emotional composure and then when I visit I lose my focus and emotionally break down. I think the hard part is he still knows me and when I ask him what would make him happy he says me. I do believe one of the main reasons I placed him was not the physical demands as he can still walk and do a little bit but the emotional toll it was taking on me. For me to try to emotionally support someone with this disease let alone physically was and is nearly impossible yet I keep trying thinking that somehow I can. I am grateful he is placed and that I did what I did as I know if he were still home I would be a nut case by now or in the psych ward. God bless and thank you for your insights. They help me a lot.
Sorry to hear you ladies are in so much pain. ((hugs)) Do try to let go of the guilt, when you are able. For me, this came about the 18 month mark. We of course will all be different. It will be 6 years for us in February, it never did get easier not having Lynn home with me. The ache is always there, even now.
It is of course much more difficult when they are still higher functioning and have an inkling of what is happening. When the declines are more severe and they are unaware, I think it is easier to accept their fate. In doing so, it was easier for me to forgive myself. This was a long process for me... I KNEW with all my heart I did the right thing for both Lynn and I, but.. but.. but.......
It is just part of my life now. Visiting with him daily remains the highlight of my days, my life. He is late stage, which brings its own set of heartbreak. But I think after witnessing and living through loss after compounded loss and seeing them so helpless, there comes a softening of our hearts. With that, came a desire to make his little worlds as happy as I possible can, and I found myself treasuring every little moment we have together. His smile, when it lights his eyes... just nothing better ♥
Just a quick post. Yesterday spent in Er with my husband after ALF called 911. He had a fight with a resident because he thought the room was his. Late last night, transferred to Ramapo Ridge Psychiatric in NJ for eval and med intervention. On my way now. Anyone have experience with this? Been suggested that his decline may also be cause for a higher level of care. Anyone know how Sunrise facilities might handle such a case.? There is one near me .
Lorrie, I'm so sorry this has happened - for both of you! My husband was transferred at night from the ALF to a psychiatric ER nearby. He had "eloped" and the ALF wouldn't take him back because "they couldn't keep him safe". He ended up in a state run psychiatric hospital for 3 months while they adjusted his meds to find a combo that worked in keeping him less agitated (that was the best they could do, they never were able to keep him calm with meds, only less agitated).
I was advised that he would probably be put in Ramapo Ridge permanently if the drs were not successful in treating the aggression/agitation. Thankfully he's been okay at home for the last 6 years.
I have previously asked Joan to send you my email, so you should have it if you want to contact me. I lived exactly what you're living and can at least be a sympathetic ear if nothing else. I know how gut-wrenching this is as well as overwhelming and demoralizing. I lived in a constant state of panic while all of it was going on.
Lynn never had to go to the ER or a psychiatric unit for his aggression treatments, so I have no experience with this.. but my heart goes out to you.
I know there have been numerous threads here where people shared their experience on this. I hope you can find some wisdom from reading through them. ((More hugs))
Lorrie, I am sending you a big hug. I hope for your well being that the doctors can find the meds or combo of meds to help your husband in a reasonable amount of time. I am not familiar with Sunrise facilities. Hopefully someone on the board is and will post the info. After the med adjustment is under control maybe Ramapo social worker could assist you with finding a suitable location. Your situation makes me mad that the staff did not take control of the situation before it escalated to a physical confrontation. I am sure to an ALZ patient all the rooms do look alike. As you said, this is a nightmare for you. We will be here to support you with understanding and kindness. Take care of yourself through this ordeal. ((Hugs))
My wife was kicked out of a Sunrise. The quality of Sunrise. Can vary a lot but I don't consider them top tier. When using a placement company after she was kicked out I was told that they never recommend Sunrise. In talking with other caregivers with LOs at my wife's Sunrise, there was a lot of dissatisfaction and the ombudsman said she never had been at a facility where the management stonewalled so much.
The Memory care units get better ratings because they have a higher staff to resident ratio. There is a very good Subrise a few blocks from my house but it is mad up of very expensive condos so they have many wealthy and demanding residents in Idependent Living and those in the ALF benefit from it.
I agree with your perspective. He wasn't getting enough care and this shouldn't have happened. In his reality, it was his room. I have already decided he is NOT going back there.
Paul c Thank you for sharing hour experience at Sunrise. Was she liked out if a Memory Care unit?
It seems that Ramapo's evaluation and recommendations will probably determine the placement to some extent.. However, I would like to be somewhat closer to my home.
Lorrie, Ramapo also has a memory care unit where "the difficult to place" are usually admitted, so don't be surprised if that's the recommendation you receive. I hired a geriatric care manager when we were going through what you and your husband are going through. She told me she had a client who was living in Conn. (children were n NJ and paying for their mother). Finally after being kicked out of several ALF's, they put their mother in Ramapo Ridge (apparently no other facility would take her) and they were quite happy with the care she was receiving. Just FYI.
I have no personal experience with Sunrise, but I have heard what paulc says - they vary widely in the quality of care they provide. Can you hire a geriatric care manager to help you with placement options? He/she should be unbiased and definitely not receive any "commissions" for placement. You would have to interview them and ask specifically if they receive any money for a recommendation or placement. It is common practice.
I'll look for your email. I'm surprised the facility took the action they did because they are well regarded in the care of dementia residents.
My wife was in regular assisted living, but I've talked a lot with people in the same building in Memory Care. MC was better. A friend of mine's husband was in a different Sunrise. He started in regular ALF but was moved to MC because he kept escaping (because he was so young visitors kept letting him out of the building). Turned out to be a good move because he had a sharp decline. My friend was very happy with the care at Sunrise but had to move him as he entered late stage dementia for cost reasons.
It does bother me that there were problems at my wife's Sunrise and HQ didn't do anything to fix it. That Sunrise and gone through 8 executive directors in 10 years and the feeling among caregivers is that if the director attempted to fix things they were given the boot.
Part of the problem is that my wife has FTD, is young and is a poor fit for all ALFs and they didn't know how to deal with her. I kept responding to her complaints so she never got to learn to trust the staff. She is now in a top rate all memory care ALF and I can trust the staff. Where she is now all staff have training in dementia care. And they have FTD experience (though she is still a very challenging resident).
CO2, Thanks for sharing your feelings which are comforting for me. We definitely have a lots of similar feelings. I don't know if I will ever get on with a normal life. I do call myself a "living widow". For the first 2 years after placement I fought every battle with the establishment. I came to the conclusion that they were appeasing me while I was in the facility and DH was placed back on the assembly line as soon as I left the building. I did not have the mental stamina to continue the fight till the bitter end as Joan and Nikki do. I admire both. I just could not do it. Now I go to battle if the situation is, in my opinion, totally wrong. I felt if I kept on fighting the 'bitter end' was going to be me! I continue to sit here and do almost nothing between visits to the NH. As long as DH is six miles down the road locked up in an LTC facility I sit at home locked in self imposed solitary confinement. I don't enjoy it but that is the way it is for me because I am just soooo tired, tired, tired of it all. Like you, I am grateful he was placed but the little light is still on in my mind that I should have kept him home longer. I can't find the switch to turn it off! The way we are dealing with it has to be okay. Sending you a big ((HUG)).
AliM, just sending you some positive energy. I can so relate when you say you are oh so tired of it all. I do not have the energy any more to fight and mine has not been placed as long as you. I was thinking the other day that I think it is the emotional connection that keeps me in a self imposed caretaker prison. And that the emotional connection probably will always be there but holds us captive until they pass. Unlike many of the caretakers here my marriage was not perfect and by the time the kids were up and out his health went south. I have had to forgive him and myself for a lot. Part of it for me is that he is fully aware of what is happening and understands that he is losing his mind yet keeps asking why he has to stay there. When I tell him because I cannot do it anymore he does not comprehend I think because in his mind he thinks he is not that bad. After all he can walk, talk, etc. I am visiting today and honestly am not looking forward to going. No matter how much I do or don't do, whether I take him out, buy him lunch, or anything he has no memory of it . God bless
I have been really worried about how I am feeling and now after reading your threads I know exactly what it is. I just sit in my self imposed solitary confinement waiting until I go and visit or take him out. I thought it was just me. Just me not even trying to start a new life but I just can't seem to do it, he is still here. As you say maybe once they pass we will be able to move on. I have my yearly Dr. And staff meeting on Thursday and it wonder why I even go. I am not listened to. He has no sense of danger or in site and he still is allowed to go for walks on his own. Human rights thing. He can still tell them off so he is still capable. I didn't place him he did that on his own so I don't feel guilty about that but I do wonder if he should be there but after he has been home for a few hours I am happy when it is time for him to go back. I love him very much but he is a handful. Bv fronto with Vascular and AD is a real messy cocktail and he doesn't know there is anything wrong with him. It must be really frustrating for him. He is coming home for a few days at Christmas and he is so excited. Can we have this? Can we have that? All foods we had when he was home and the kids were young. He also wants to start decorating the patio right after Halloween. I guess I will have a long Christmas season this year. Maybe that will be good for both of us. No kids coming so it will be quiet.
My DH was at Sunrise Memory Care for 5 months and after that experience, I would not recommend Sunrise for Memory Care. I found that the facility does not know how to deal with AD residents. Their interpretation of Memory Care was to keep them on the Unit, keep them fed and have activities. We had revolving staff and no nurse following their care. His behaviors got out of control and the only thing they did was call me to report - and this call was made by the care staff, not a supervisor or nurse. They only interceded after 10 days of escalation culminated in him hitting another resident and then they demanded he be sent to an ER (any ER as a matter of fact) to wait for a bed to open in an area hospital with a geri-psych unit (not necessarily the same facility). That was their policy. I had to insist that he stay in the facility with me there with him 24/7 until a geri-psych bed opened, so that he only needed to be moved once. That took 3 days and I was almost borderline nuts by then, but we did it.
He is now living in a dementia-only facility and all staff understand how to care for their residents. The ratio of staff to residents is terrific, nurses are on-site in all Units at all times, close attention is given to all of their needs, they are treated respectfully, and the facility has a feeling of home for residents and family member alike. In a horrible situation, this has been a huge blessing to me.
Jazzy, You are welcome to join us in our cell. We all have the combination to the lock so once, or if, we line it up correctly we just may walk out with our freedom. Let's keep hoping. ((HUG)) being sent your way. CO2, Your mental turmoil is worse than mine since DH is mostly nonverbal. I know he understands what I say but I don't know if he knows who I am, After Sunday's visit I told him he could turn around and walk down his hall because I had to leave. He immediately turned his merrywalker around and walked down his hall. It is so frustrating for me because I don't understand why he won't talk. He grabbed my wrist so tight that I thought he was going to break my arm when I started to wipe his mouth with a napkin while feeding him. What a grip! In January we will be married 49 years and he was never mean to me or the children. He was in the AF for 20 years and was deployed about half the time. I feel like I raised the kids by myself and just got used to doing everything because he was gone so much. Doing everything a house requires is not easy now that I'm old! I just let it go! No marriage is perfect IMHO. I moved with him for sixteen years (except the year in Vietnam) and then settled here when my DD started high school. DH came home every weekend. I don't feel guilty about the vow through sickness and health because I think I am still taking care of him. I just have the LTC staff helping. I don't believe the vow meant that I had to take care of him in our private residence but to do what I thought was best for him. I have not forsaken him although I sometimes have thoughts that I would like to.(That's mean)! Hopefully, C02, we will someday have a more lively life. ((HUGS)) and take care .
AliM, I had a chuckle when you invited jazzy to join us in our cell. It surely is a cell. Heaven knows we do need to laugh once in a while. I have a friend last year who helped me grieve the loss of my marriage. Anyway she suggested looking at the visits as just one of my part time jobs instead of creating this big deal,in my head when it comes time to visit. I have a little job that I do from home and reframing the whole visit thing has helped me. I just tell myself it is part of my job that I have to visit and try to let it go. I have also tried to stop reviewing the visits in my head after I leave. They are neither good or bad. They just are visits and I really am not responsible for how they turn out. A question for you--did your husband have a sudden decline after a period of slow decline or has it always been slow. Several people in my support group say there was a sudden decline after a long gradual decline. It may have to due if it is Lewy body or not. Mine is not Lewy body. God bless. You are not alone. We are in this together. And yes jazzy please chime in anytime. We welcome your comments.
Thanks folks. I will definitely join in. I bring DH home on Saturday morning and take him back on Sunday after lunch, but I am finding that he has trouble sleeping after these visits. He is thinking that it may be better to have him visit days only going back for bed. I have just moved closer to him so it would work.. I have a Yorkie and they have fallen in love. This little dog knows DH is ill and really helps. He keeps DH laughing while he is here. I am sure that day visits will be better for him. I often go on Wednesday and have lunch with him and he enjoys that time. I just can't get myself to not just sit and wait for these visits but to find something for me. The other problem is money. It is so expensive to have him in care that I have to be very careful that I have enough to pay my bills so anything extra will be well thought out before going into it. I just moved so I have to pay all final bills there and then set up payment for the ones in my new home. I hope to have everything set up and know what extra I gave by December 01. It's a worry for sure. I guess if he were more advanced it might be easier but maybe not. It's me not him.
I also experience what AliM called "self-imposed solitary confinement," along with what she and others talk about - doing almost nothing in between visits to my husband. I think I'm sinking into depression and the increasing darkness and short days sure don't help. I've also started to do what elizabeth did after her husband died - get up and dressed at the same time every morning, get a little exercise, etc. If this mood does not turn around very soon, I'll get some medical advice. I've already lost seven years to this damn disease and I don't want to lose any more.
Fiona, how wonderful it is to hear from you ((hugs)) I remember the battles you and your dear husband went through... so happy to hear you really like his new facility. Such a blessing to find a nice place for our sweeties. Glad to hear things are going so much better.
My husband has been in NH for four months; diagnosed with ALZ and oxygen dependent.
On two or three occasions during this time, he's had a day where he experiences a total inability to control his movement and mobility. Extreme shakiness. I would not describe them as "jerks" but a complete loss of muscle control. He's so "wobbly" that, even with the assistance of two aides, he cannot stand beside his bed. These episodes only last one day and the next day he'll be out of bed, back in his recliner and feeling much better. However, after one of these incidents, his appetite disappears for several days.
He recently gained 2 lbs but he ate nothing at lunch today, looked at his tray as though it contained poison and when I did coax him into taking a bite, he rolled the food around in his mouth and took a long time to swallow. These are symptoms of his past failure to eat.
yes, my husband when he's had enough or doesn't want to eat will chew his food incessantly (at least 3-5 mins) and never swallow it. When I ask him to swallow it, he spits it out. Have bought power protein powder to mix as a milkshake to give to him when he doesn't want to eat. Gives him the calories and keeps his weight steady.
I give him Breakfast Essentials in his milk but sure the protein drink is a better idea.
Thanks for feedback.
Your husband has had no experience with the extreme shakiness and total lack of mobility? That's the real puzzle to me.
I'll check with DON tomorrow regarding these episodes as they seem to come out of the blue and only last one day. Can't attach them to any particular event, etc.
paj, no we haven't had the extreme shakiness and total lack of mobility. Actually, we did have that 1 day for no reason at all. But once we got him up he was fine. My husband is still at home (early/mid stage 7) with a live-in aide, thanks to his LTC insurance.
The protein powder is what weight lifters use and has a lot more calories. I give it to him to keep his weight stable and his calorie intake enough so he doesn't start to lose weight. I fear that once he starts to lose weight we won't be able to stop it.
Nikki, it is good to hear from you too. Like others, I'd wondered how things are going for you and Lyn and I'm glad that you are still in their fighting for whatever will make his days better. You are in my thoughts.
Myrtle, I have one of those SAD lights. It is still sitting on the floor. I know it does help especially when the daylight savings time ends. Thanks for reminding me that I need to plug it in. I too work from home and thank goodness I have managed to work some. It helps keep my mind off things. I have always had more problems in the winter months and my doctor told me to take the medication in November. Last year I did not start until February and by then the depression was full blown. The medication was fluoxetine. It is more for anxiety but it does help the mood. It is not habit forming at least it has not been for me and is easy to get off. As soon as the days start getting longer I stop taking it.
I went for my yearly assessment of how DH is doing. 1. No more angry aggression 2. Interferes with care of other residents. Try's to tell nurses what to do. 3. Eats well but very obsessed about making sure he doesn't gain weight. 4. Still able to walk out of the building on his own. 5.willing takes on jobs if asked like on residents council. 6. Drifts off on his own to much. 7. No change in Meds required. Doing well on the Trazadone and Ativan at the existing levels.
The last things that we talked about was how he behaves after being home with me for the week end. I find he gets cranky after dinner but other then that he treats me well. He try's very hard to do some of the things he used to do but gets frustrated, so I have been bringing in help to work with him. The Ward Nurse said he is very difficult after he returns from a week end with me. They think it may be better to just bring him home for the day not overnight. They want him to go out with me but don't like the change or behaviour that they see after I bring him back.
I don't know what to do! I am thinking to bad that he gives them a hard time that is what I pay them to handle. Why should he have to give up his time here so they don't have any problems. He loves to come and play with Willy the Yorkie puppy. On the other hand some days he is cranky and bossy and I can't wait to return him to LTC. I just don't know what is a happy medium or if there even is one.
Staying with you the entire weekend might be too much activity or stimulation for him. I see this with my wife, she can enjoy a very good active day but the next day she is strung out and will act out because she doesn't feel good. All I can recommend is to experiment, try having him just for the day and see how he enjoys it and how he. Is the next day.
Hi Jazzy, Just the other day, you wrote that after the overnight visits, your husband was having trouble sleeping. You said that he thought it would be better to have day-visits only and you thought so, too. I don't see what's changed except that the ward nurse agrees with you. Can't your husband and your little Yorkie could enjoy each other's company during the days when he visits?
Yes I'm sure they can. I just feel so mean to have to tell him he has to go back at night!! It's just me trying to keep things as I would like them to be. I keep sticking my head in the sand to not have to see or admit that things are changing and that I need to find things to do with him during the days when he visit like taking him to the Mall instead of bringing him here. I feel so bad about leaving him there and now he is always telling me how much he misses me. I end up feeling so guilty. I also wonder if he is trying to manipulate me knowing how I feel about him. I know he is very manipulative. They said he gets very bad after I take him back from a visit. I guess I will try to just do the day visits only and see how that goes.
((Jazzy)) Maybe it would help if you looked upon this as trying to help your husband? If I remember right you mentioned he has nightmares when he sleeps over, but not at the facility. Maybe it would ease the guilt if you can turn your thinking around?..... that you are trying to bring him comfort, and not punishment. ((hugs))
CO2, In answer to your question about DH's decline pace it has been extremely slow. From way back in 2004 when he started losing his sense of direction to official diagnosis in 2008 and placement in 2011 it seems like everything happened in slow motion. I cannot remember a sharp decline in any behavior. It has all been gradual. I know the downward spiral may happen tomorrow but at present he is doing the same two things (eating and walking) that he could do when first placed. Physically he is strong and I fear that may become a caregiver nightmare down the road. The only thing I think that may be slower is pouring molasses outside on subzero day! On another note, I went for an okay weekday visit yesterday. CO2, after not visiting for a few days in row I think I am doing okay, but after a visit I come home and start reliving the past 10 years over. I feel like that 10 years is replacing my previous 57 years of memories where I did have some wonderful times. I think if he could just acknowledge that he knew me it might be easier, but knowing he cannot does not make it any more pleasant for me. Be good to you!
Jazzy, When you get your heart and head to cooperate with each other you will know what to do. Saying that is a lot easier said than done. Hang in there. (Hugs)
aliM, thanks for answering my question and pouring molasses on a cold day is the perfect analogy here. I know what you mean about this disease taking over the memories. I did not have a great marriage but we successively raised kids who all graduated college and are doing well. We never got the chance to travel due to his health issues but I too think about mostly the time since his health decline and eventual,placement. In fact I have a hard time remembering the other 38-39 years. I enjoy and love my little house and fully felt I would stay here but now once this is all over I have actually thought about moving because of all the memories with this disease--not him--but the disease. Of course nothing can happen unless or until he passes. At the rate he is going I may end up in assisted living before that happens. The difficult thing for me is that he still knows me and understands what is happening to him. Most of the other caregivers say they lose awareness but I know someone in my support group whose husband just died who knew her until he passed. Sending you a hug
Your right Nikki I need to try to get rid of this guilt but it's hard. I didn't do this to him and I can't make it go away but I would give anything to have him back as he was. I guess everyone of us would like that but it is what it is. He says things like" I guess you will be happy to take me back? I guess it's better for you when I am not here! This really plays on me then I get upset and end up in tears after he does go back. I know it's the disease and I know I can't change it but he sure pushes my buttons. I spoke with him about just coming for days and I told him they thought I should try this as he seems very upset and agitated when he stays over so he said we can try it.
Well I'm off to my Dr. And then some shopping so thanks again.
Do we automatically get "signed out" if we leave the site too long?
I signed in. Wrote several sentences. Got a phone call. Left my computer. Came back to finish comments, found I was signed out and comments were gone.
Just curious as this has happened to me twice.
Just wanted to say thanks to everyone for each and every comment.
When everything feels completely hopeless, it always helps to come to a site where people know exactly what I'm experiencing with my spouse and this dreadful disease.
paj, I've found that if I wait too long to type something, I get kicked out of the Comment window, but I don't think it's ever signed me out. Because of this and because I'm not a good typist, I often write my comments on a word processing program and then copy them into the Comment window.
I often get thinking something is what is happening and how I should handle it. Then I go on here and talk about it and I always have someone come on and gently redirect my thoughts and help me rethink the direction I was going. I have a hard time remembering that he has no I site and I tend to go along as I did before he was ill. It sure helps to have all this experience available to help me on this terrible walk. I sometimes feel so alone. Learning to work with this disease and learning to live alone and be totally responsible is really stressful. Lots of tears!! Lots of lonely days and nights.
Well took him out today for about 5 hours. When I got there he tells Me I gotta get him out of here and he is going to kill himself. I know he won't but the mere mention of this sent my guilt soaring again. He has mentioned suicide about 3 times recently. Anyway I called the doctor and spoke to the nurse at his care facility who suggested getting him off the Exelon patch. I have ask the doctor while ago and she said no so we will see what she says this time. I just do not think it is helping him that much. The nurse said that the side effects of dizziness and falls may outweigh the benefit he is getting. Has anyone else taken your spouse off the memory medicine? This disease is like living in perpetual grief with no end in site.
Can you guys move over just a little and make room for me? Looks like I am now "qualified" to officially join this thread. After an illness and 9 days in the hospital...dh was admitted to a rehab facility (nursing home) for some PT/OT to try to get him back to his baseline. The illness left him very weak. He has since been evaluated and qualified for "in nursing home care" rather than "at risk and help in the home care" as he had before. Surprisingly, he has acclimated very well to his stay there after a very rocky first day or two when he wanted the police called and an all points bullintin issued until they located me! He had never been unable to see me before. I have decided to leave him there. He loves the caregivers and they have genuinely taken to him. They love to cut up with him and he loves the attention. The only problem? He doesn't know that the stay is now for good. He hasn't asked for a week or so and I haven't told him. He seems content as long as I say that I will be back real soon. So many conflicting emotions! Could I bring him back home? Absolutely! But I had already decided that I would only do it with help. I knew I couldn't do it alone any longer. I think I could handle him for a few more months...I THINK! He has declined so very much in the past 6 months really just all of a sudden! Then I would have had to consider placement. With his sudden illness and things working out the way they have so unexpectantly, he is already comfortable in his surroundings and with the caregivers. Now I really hate the prospect of bringing him home for what may only be a few months at best and then have to go through the placement and settle in phase all over again. The next place might not be as good a fit as this one has seemed to be. And it is only about a 12 min drive from home. So, move over folks. Make room for me. I feel better knowing that I am not alone. And having the comraderie of seasoned veterans makes the way easier for me! He has been there for 3 weeks now...(insert big sigh).
Aunt B, You are right to leave him there and not to disrupt him again. I am not a seasoned veteran but 5 months ago, when I got the call that there was an opening, I put myself through the torture of "Is it to early? "Should I wait until the last minute?", etc., etc. It's a waste of time. Build on the positive experience he is having at this facility. Being only 12 minutes away is great. Maybe he won't even ask if it is for good and if he does, you might be able to avoid a direct answer. It is very tough to do this but if your spouse adjusts OK, so can you. Hang in there.
I agree that it would be best to leave him where he seems to be settled in, so close to home, and with good caregivers. It sounds like Divine intervention.
My husband is on a VA contract with the NH. I pay a little extra each month for a private room.
Each time I approach the local VA clinic about some issue of concern, I'm told he's been removed from the VA doc's patient list since he's under the care of the NH doc.
It's been a nightmare trying to get help from them. Either they don't know what they're talking about or they just don't care.
Does anyone have a spouse under VA contract and if so, what has been your experience in dealing with the VA?
Patsy, We got benefits (day care and aides) from the VA but we are not getting benefits from them for a NH.
My understanding is that when a person enters a NH, part of the deal is that they have to be treated by the doctor who works for the NH. I also think that this is true no matter who is paying for the NH -- private pay, Medicaid, VA, etc. So what the VA is telling you -- that your husband is under the care of the NH doctor -- is probably correct. Others whose spouses are in NHs may be able to tell you how to deal with the NH medical staff.
Thanks Myrtle for your encouragement. It has been easier knowing that he is OK. And Mary75, those were my daughter's exact words to me..." Divine intervention". Going now to visit.
It's seemed difficult to get the NH to follow through. They promise to follow up on my requests for travel oxygen, physical re-hab, etc. but I find I'm constantly re-asking or reminding them. I only want him to remain mobile as long as possible and that's not possible when he's confined (because of 24-hour oxygen requirements) to the bed, recliner and wheelchair.
I turned to the VA for help but was told I need to work through the NH doctor. So, you've confirmed that for me.
I'm concerned that the NH is thinking is "He's 87 years old. He has ALZ and physical problems. So why bother." Maybe I'm wrong about that impression. I hope so.
paj, sadly that is probably exactly what they are thinking. I fought tooth and nail to get Lynn the therapy he needed to maintain the little function he has. Keep riding their butts! About the VA... when Lynn became a resident of a nursing home not affiliated with the VA, they would no longer oversee his care. I think this is pretty standard. The best thing you can do is speak with the DON (director of nursing) or someone with equal authority and explain to them what you want and expect. Their follow through is usually better. Best of luck!!
AuntB, so glad to hear your DH has settled in so well. Such a blessing!
Nikki: The thing is...He's in the NH under a VA contract. I do pay a minimum each mo. for the private room. You'd think with it being a VA contract that the VA would still be involved in his care.
I just want to stop being pawned off from point A to point B with no resolution from either NH or VA. Get one story from the VA and another from NH.
Yes, I'll still ride their butts. Just because our spouses have this horrible disease does not mean that we want less than the best for them in their remaining years.