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Originally posted by: Starling
The hospital gave me a list of nursing homes they approved of. They left off the bad ones although they never said that. What I saw was good and even better.
First of all I work WITH THEM. I never did any of his care myself. I let them do it from day one.
Do they do things exactly the way I'd do them? No. Is that OK? Yes. I've been an office manager and I believed the person doing the work gets to decide how it is done as long as the work gets done. Same thing here.
I go to all the care conferences even when no one else does. Everyone turns in paperwork for those conferences and on occasion I've asked for and received copies, but not always.
I check in with an aide or a nurse EVERY TIME I go. I make sure they understand that if they need me for anything, or if he needs something, I will do whatever they need. I ask questions. That is how I know that an untouched tray would set off alarms. I've seen what the aides do with the trays. And I know when they go back down to the kitchen, a kitchen aide also checks them out before everything gets washed.
I've seen the dietitian on my husband's floor when something odd happened to another patient's food. I've got a list of all his weigh ins, so I know that there was a period when he was losing weight when they were weighing every week. I asked about what happens if his skin starts breaking down. I've seen the sign off sheet that gets marked off every day, for just that reason. And once one of the aides didn't like what she saw when she was changing him and went for a nurse. There was actually nothing wrong, they were just being very careful.
I don't ask for much and I always say thank you.
When I needed extra eyes, I asked for them and got them through hospice and neighbors. I've got neighbors who have dropped in and never told me they did it. I found out from the aide.
They do a thankless job I can't do and they do it well, and I say so.
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Originally posted by: Roger G. care partner
Terromari,
Was reading your post. My wife and I also met at a dance club. We danced one time and I was in love forever.....4 months after we were married she was diagnosed with AD. That was in 2003. We met in 1996.......I love her more each day. Even though she can no longer communicate except by a smile once in a while, a raise in her eyebrows, or a blink of the eye. You know that recognition I speak of....if is always there for two people in love.
She is bed ridden, She can not do anything except lie there. And I love her still more and more everyday. Do I get down once in a while, hell yes, do I cry. Every damn day. Would I change anything? Hell yes, I would cure her. Can I.....nope.....would I ever desert her. Nope. She is my love now and forever. The love of my life. As you love is to you.
That is my rant......a rant on how much I love my wife. The rest of the stuff....well, it is what it is. I just deal with it. I can not change it......so why bitch.......Just look over at the one you love, give a kiss, give a hug and say "I Love You"
Phyllis and Roger
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Originally posted by: Morgan R
Starling,
Not one thing I posted to the other poster regarding the situation where a person needs to be there was directed at you. I do not need an explanation of why you do not go more often or why you go every day. I could care less, what I do care about is the note you posted regarding the type of care home my husband is in. My husband is in a wonderful home, I just wanted folks to know that you have to be there otherwise there are things that go un-noticed that you would not know to address. My expectations might be more than others or less than others but please, why do you always take offense to anything I have ever posted both here on on all forums.
I will not respond further
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Originally posted by: Starling
quote: Originally posted by Morgan R:
NOW REALLY STARLING, DO YOU THINK I WOULD HAVE HIM IN A NURSING HOME WHERE I FELT LIKE SOMETHING LIKE THAT WOULD HAPPEN, NOT ON YOUR LIFE, HE IS IN A 5 STAR HOME. NO MORE SAID
But you don't trust them further than you can throw them. You said so. I took you at your word. And that truly is enough said.
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Originally posted by: Morgan R
[QUOTE]Originally posted by Starling:
Morgan, I'm sorry that the nursing home your husband is at is one where you feel you cannot trust them.
If you really think that if you got sick and couldn't be there for hours every day that he would be abused or starved, you need to find a new nursing home. Take it from someone who did get sick.[/QUOTE
NOW REALLY STARLING, DO YOU THINK I WOULD HAVE HIM IN A NURSING HOME WHERE I FELT LIKE SOMETHING LIKE THAT WOULD HAPPEN, NOT ON YOUR LIFE, HE IS IN A 5 STAR HOME. NO MORE SAID
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Originally posted by: hacky
Has anyone had an experience where the NH gave psycotic meds to their loved ones without their knowledge? I was listening to the ALZ.org/NAPA program by phone tonight and someone said their loved one had been given meds that were not good for them and they had bad reactions. Are you in control of This really shook me up when I heard it.
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Originally posted by: Cathy J. M.
quote: Originally posted by hacky:
Has anyone had an experience where the NH gave psycotic meds to their loved ones without their knowledge? I was listening to the ALZ.org/NAPA program by phone tonight and someone said their loved one had been given meds that were not good for them and they had bad reactions. Are you in control of This really shook me up when I heard it.
In addition to JAB's excellent advice, be aware that even an expert brain specialist who knows your loved one very well can still prescribe a drug that causes a bad reaction. Every patient responds differently, and though approved medications work well for MOST patients, they don't work well for ALL patients. So it's important to make sure that the effect of any medication change is closely watched -- and with some meds (seroquel, for example), additional lab tests and other medical monitoring are important.
Even the best doctors have to make their best guesses sometimes, and sometimes their best guesses are wrong. Of course, there's also the problem that not all doctors are above average! 
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Originally posted by: Morgan R
quote: Originally posted by Starling: quote: Originally posted by Morgan R:
NOW REALLY STARLING, DO YOU THINK I WOULD HAVE HIM IN A NURSING HOME WHERE I FELT LIKE SOMETHING LIKE THAT WOULD HAPPEN, NOT ON YOUR LIFE, HE IS IN A 5 STAR HOME. NO MORE SAID
But you don't trust them further than you can throw them. You said so. I took you at your word. And that truly is enough said.
Put words in my mouth Starling, I did not say that I could not trust them as far as I could throw them. I think you must feel guilty now leave me alone.
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Originally posted by: JAB
Hacky, you need to look very carefully at the paperwork you signed. Sometimes, there will be a release where you agree to let the NH doctor change meds without notifying you, let alone obtaining your permission. If you signed something like that, you need to get it changed. And it's a good idea to regularly check to see what meds he is receiving -- sometimes signals can get crossed.
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Originally posted by: F. A. R.
Thank you to everyone who replied. You have provided me with great advice.
Since posting, I developed phlebitis in my leg and have not been able to visit my husband for the past week. The children have been visiting with Dad, feeding him some meals, etc. to help cover what I've been doing, but less frequently. Not once has he shown any sign that my presence has been missed. As for me, I have survived and if the doctor gives me the okay tomorrow, I will visit him. It was a painful week both physically and emotionally for me, but being a believer that everything happens for a reason, I think I have learned from it.
I will continue my visits, but will not feel guilty if I don't get there everyday. I will continue to watch over his care, but I will not be an obsessive constant presence. I am now his voice and I will be his advocate until the bitter end. Yes, I am in mourning and I am going through all of the classic phases. But, in the end, I hope to be whole again --- no, I know I will be whole again. There will be good days and bad day, there will be tears and there will be smiles. It will never be the same, but I will have the memories of the wonderful life we shared and I will treasure them no matter what lies ahead in my future. I know this sounds trite, but this is the path I will follow. As one of you said, we all must do what we feel is best. Phlebitis, you gave me time to reflect,now, stay away!!!
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Originally posted by: Starling
They changed my husband's meds several times when they were trying to get his aggression under control. They did not discuss the changes with me every time they did it.
What I did was ASK, ASK, ASK. They knew I cared and they talked to me about what was going on. The first time he smiled in well over 6 months I told them, and they had one more proof that they had gotten the mix right and stopped changing things.
When his situation changed they dropped meds again. The Nursing Home doctor doesn't believe in over-medicating.
If you see something that you think they don't know, you need to talk to the nursing supervisor. They need your input, and you need to make sure they know you WANT to know what is going on.
Anyway, it works for me.
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Originally posted by: terromari
[QUOTE]Originally posted
Do NOT take him out of the nursing home for any reason. He doesn't go on outings. If possible he doesn't leave his floor or unit until the nurses say it is OK for him to do it again. From now on, the nursing home is HIS HOME.
QUOTE]
OK, I take my LO off the floor every day I am there -- to the coffee shop, to the lobby, to the auditorium for activities, and outside on the grounds. They have him on a good medication mix such that he is much like the love who left me last summer. He is chairfast, so he can't run away, although we are working on walking him on the unit. If I did not feel confident in his ability to be with me off the unit I would not take him, but I take him to get him off a floor where the rest of the residents are more along their journey than he, he knows me, wants to be with me, and it is the best time I can spend. He confided tonite he gets a little nervous being there without me, so he has some reality, and he remembers a lot of things. Not saying he is cured by any means, but he is holding, and I am going to help him as long as I can and continue to pray for a cure. Everyone is different, but he does seem to be past his angry, combative self.
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Originally posted by: Starling
F.A.R.
Yes.
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Originally posted by: D Steinhauer
Our 26th anniversary is comming up on Wednesday. Can't take him away, bringing food in for a "celebration" makes no sense...I guess I want to celebrate our day, but not sure how. I am there every single day. I just don't know how to do anything special. I guess it would just be for me anyway. I just hard to realize I have the best it is ever going to be, right now. I know he is happy to see me everyday. I suppose I could look at that as a "year long" everyday gift? He just don't care to look at photos anymore. They mean nothing.
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Originally posted by: Cathy J. M.
terromari, good to hear that things are going well for you and your dear husband! I can well imagine what a huge positive difference your times together mean for both of you.
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Originally posted by: Starling
terromari, I am taking it for granted that your husband isn't exit seeking. You aren't worried about getting him back up on his floor. He has been living where he is living for a while and has settled in.
Which is why doing exactly what I said not to do is working for you, but wouldn't have worked for me, and is probably making the situation with the original poster much worse.
Also, it sounds like your husband is in a ALF and not in a locked ward in a nursing home were they are worried not just about exit seeking but also aggression. My husband didn't last a week in the open ward. He got out of the building before they managed to get him back for one thing, and he occasionally attacked the aides on the open floor. The locked floor knew how to handle that - back off and try again in an hour. The open floor aides were used to patients that cooperated.
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Originally posted by: grammajan
Hi, to all ... I just stumbled across this site and have been reading all of your comments. Until now, everything I have found on grief has been about the death of a spouse, not the on-going grief and struggle when they are still alive, but not the person you've always known.
In May, I too had to place my husband for care. However, he is in an Adult Family Home, rather than a nursing home, as you all have been discussing.
We have been married nearly 48 years and this is the most painful thing either of us has had to face. In the past, we have always faced life's challenges together and now we must each find our way through alone.
I have not told most of our friends because I feel so guilty and I do not want to be judged for having finally taken this step.
Thank you all for sharing from your hearts ... I am so glad I found your messages (and that they are so current!).
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Originally posted by: lurk
Grammajan, can you tell us a little more about your husband's condition and about the Home? Welcome to the best place to be for all of us; I love my friends here who not only understand, but teach and train me and commiserate--so supportive. Keep trusting Him.
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Originally posted by: Cathy J. M.
quote: Originally posted by grammajan:
In the past, we have always faced life's challenges together and now we must each find our way through alone.
I have not told most of our friends because I feel so guilty and I do not want to be judged for having finally taken this step.
I'm glad you found this forum -- wonderful support and information here. Still, I hope you'll tell your friends that your husband is in a care home. Surely your friends will understand, and if they know, you can have more social life.
Your life as a couple isn't over, either. You can still connect with your husband's inner spirit, and enjoy some good visits. You're still a couple, and taking a team approach to his care is just the wise and caring thing to do. It takes more than one person to provide care 24 hours a day. This way, you have time to refresh yourself as well as to spend time with him. Good for you!
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Originally posted by: grammajan
Hi, lurk~
Thank you for responding - I do feel pretty alone in all of this right now. Snorky stated below that he/she couldn't believe our friends don't know. There are just 4 who know and these are people who have hung in there through our years of struggle with his health. They have called or stopped by to visit since his move. I'm just kinda doing this on a 'need-to-know' (deserve to know) basis. These few friends have stuck close enough to know this was best. Our children, our social worker, and some friends HAVE been pressing me to take this step. But, I had to get to that point of accepting this myself.
My husband has had symptoms of Parkinson's Disease for about 12 years now - diagnosed 10 years ago. He is one of those people with PD who have very little tremor, but he got the Dementia that often comes with PD. He is currently 68 years old. He has been my best friend and my Sweetheart since I was 18. A wonderful, fun, thoughtful husband and dad!
Thanks so much for the 'welcome' ... I've never done this sort of 'talking' online and it's kinda intimidating.
quote: Originally posted by lurk:
Grammajan, can you tell us a little more about your husband's condition and about the Home? Welcome to the best place to be for all of us; I love my friends here who not only understand, but teach and train me and commiserate--so supportive. Keep trusting Him.
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Originally posted by: terromari
quote: Originally posted by Starling:
terromari, I am taking it for granted that your husband isn't exit seeking. You aren't worried about getting him back up on his floor. He has been living where he is living for a while and has settled in.
Also, it sounds like your husband is in a ALF and not in a locked ward in a nursing home were they are worried not just about exit seeking but also aggression. .
My love was exit seeking at the VA hospital last year, and in the behavioral unit to some extent. He is not exit seeking now, but is in a locked ward in a nursing unit. He is confused, pleasant, and not in the physical decline of the rest of the residents. I pay a CNA to go with us when we go off the grounds to a restaurant. Haven't been lately because of sister's family health issues, but hope to resume soon while he can still enjoy his outings.
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Originally posted by: grammajan
Oh, yes ... this adult family home is in a quiet residential neighborhood and is a large, but regular house. When my husband moved there, they had only one other resident - a lady in her early 90's with AD. They now have another lady, also with AD.
It's quiet and he receives excellent care and attention. Because it's small, he gets very individualized attention too. They welcome me (and others) to visit as much as possible. I am still very much co-ordinating his care needs - but, now I have extra hands to do the heavy and the routine stuff. That frees me up and our time together is sharing (when he's able). I have time and energy now to just rub his shoulders or hold his hand.
Yesterday, he was unable to swallow his lunch or meds - and unable to talk. This morning when I went, he was doing much better and we could talk and even laugh briefly about an old memory. You just don't ever know.
He cannot safely walk alone. Cannot remember how to use the toilet or climb into bed. Cannot shave, shower, or dress himself. Sometimes cannot feed himself. And, there's always the fear of his choking, as happens with advanced PD.
quote: Originally posted by lurk:
Grammajan, can you tell us a little more about your husband's condition and about the Home? Welcome to the best place to be for all of us; I love my friends here who not only understand, but teach and train me and commiserate--so supportive. Keep trusting Him.
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Originally posted by: Snorky
I placed my DH in a NH in May, also because he was getting combative and I was afraid. He has adjusted ok but just won't cooperate very well which means I need to be there for showers etc as he refuses.
I usually go at least every other day because that is what makes ME feel okay. Sometime I am there each day, it kind of depends on what is going on in my life. When I'm there I can't keep my hands off him in one way or another and I think it makes him feel good. He doesn't know who I am or our three kids. Doesn't even remember his younger years either so he just seems to live in the present for now. We've been married 52 wonderful years.
I took a 2 week trip with our children in July and felt ok with it, but had also hired someone to visit him often, which she did. Sometimes I go because I want to be near him and touch him so a lot of it is for me. Plus I talk with the CNA's and nurse each time I go. It's a small NH so I feel close to most of the help in his unit.
I don't like being alone or seeing my friends who are couples having each other but I realize it isn't going to change. I feel I have to keep busy with activities or I sit and think too much. I'm appreciative of the wonderful years we've had and there are people who have issues worse than mine, but a lot of times that doesn't make it any easier. There is guilt too and there are times when I think maybe I could keep him, but that passes when I see how he is digressing.
Grammajan, I can't believe your friends aren't aware of his condition that you could keep his placement from them. Mine were on me about 4 months before I place my DH that I should think about it. They were concerned for me and still are. I think your friends will understand why you had to place him, if not, they haven't had to walk in your shoes.
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