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Adjustment to spouse going to nursing home
Internal Administrator
Posted: Tuesday, January 17, 2012 4:48 PM
Joined: 1/14/2015
Posts: 40463


Originally posted by: F. A. R.

In late May,my husband for 45 years entered a nursing home. It was the worst day thus far in my life. My goal was to keep him at home for the duration of his illness, but the situation became too difficult. I had help come into the home from an agency for the past year and we were up to 12 hours of care a day. However, I always had to be around since he needed two people to assist him many times a day. It was impossible for one person to get him out of bed, bathe and dress him, to take him to the bathroom, and to get him to bed at night. He had to be watched constantly as he would try to stand, but could no longer support himself. He virtually does nothing for himself anymore. He recognizes no one, knows no names - not even his own. However, he does respond to his name at times.
The agency experience was not the best - we had over 30 different caregiver over the year. We had chosen a nursing home back in December, but twice I declined his admission. Finally, when I learned that our best caregiver was leaving, I called and said we were ready. Taking him out of our home that day tore me apart. Then to see him amidst the other residents all but did me in. I was going to him from 11 a.m. until 8 p.m. for several weeks until a nurse with whom I had become friends told me that I needed a break for my own sake. Reluctantly, I cut back to four to six hours per da. I have only missed a few days and feel horrible even though I know he has good care. I just miss him so much. But, when I am with him it also hurts when he looks at me with a blank stare, talks with animals that are not there, talks jibberish, and hasn't once asked about home. When I am at home alone, I cry, on the way to the nursing home, I cry, on the way home, I cry. How long does it take to adjust, and will the awful pain of losing my husband who I can still see and touch ever go away?
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: k mason

F.A.R. My wife was placed in a facility last year & I can't get over the sadness & the loneliness that I feel. I know it doesn't help my situation when I visit her everyday but last year her neurologist said my wife could be dead in 15 months which if he's right would be october/november. I realise this is only an estimate & my wife is stable right now but there's that dread in me that what happens if she takes a dramatic turn for the worst, I want to spend as much time with her as I can while I can. My wife's friend made a very interesting comment to me, she thought that as I visit her every day this may have resulted in the stability that she is showing & maybe any neglect on my part may have resulted in a rapid decline. I do feel that I am setting myself up for a fall in the future when things do change for the worst, but in a way, I'm addicted, I just love her so much.
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: D Steinhauer

quote:
Originally posted by F. A. R.:
In late May,my husband for 45 years entered a nursing home. It was the worst day thus far in my life. My goal was to keep him at home for the duration of his illness, but the situation became too difficult. I had help come into the home from an agency for the past year and we were up to 12 hours of care a day. However, I always had to be around since he needed two people to assist him many times a day. It was impossible for one person to get him out of bed, bathe and dress him, to take him to the bathroom, and to get him to bed at night. He had to be watched constantly as he would try to stand, but could no longer support himself. He virtually does nothing for himself anymore. He recognizes no one, knows no names - not even his own. However, he does respond to his name at times.
The agency experience was not the best - we had over 30 different caregiver over the year. We had chosen a nursing home back in December, but twice I declined his admission. Finally, when I learned that our best caregiver was leaving, I called and said we were ready. Taking him out of our home that day tore me apart. Then to see him amidst the other residents all but did me in. I was going to him from 11 a.m. until 8 p.m. for several weeks until a nurse with whom I had become friends told me that I needed a break for my own sake. Reluctantly, I cut back to four to six hours per da. I have only missed a few days and feel horrible even though I know he has good care. I just miss him so much. But, when I am with him it also hurts when he looks at me with a blank stare, talks with animals that are not there, talks jibberish, and hasn't once asked about home. When I am at home alone, I cry, on the way to the nursing home, I cry, on the way home, I cry. How long does it take to adjust, and will the awful pain of losing my husband who I can still see and touch ever go away?

Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: Cathy J. M.

I can't answer your question about the pain going away -- but I do think you can be happy again. That might sound contradictory, but think of how it's possible to have a physical pain -- say, from a broken arm -- yet feel a sense of overall well being and happiness. So I'm sure you can be happy.

You need the close comfort of friends (to listen to your tears and hug you, and to take you out for delicious meals and to concerts and plays). And you need the support of at least one other person -- preferably two or three -- who make a true effort to listen to your grief and give you empathy.

You might benefit from a grief support group. By all means, take up some interest that you've been putting off while caring for your husband -- a class, a club, a volunteer project -- anything that really interests you and that will get you involved again with other people. If you can, go to a religious group that fits your spiritual path.

In other words -- don't spend most of your time either alone at home, or at the nursing home. By all means, spend time with your husband at the NH -- but spend time creating a joyful life for yourself too.

If the idea of "an interest" or "a joyful life" feels totally blank and dead and out of reach -- then you're truly depressed and need to see a counselor. Your feelings are natural but you can work through them. You deserve to be very happy!
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: Starling

The first thing you need to do is stop spending four to six hours a day at the nursing home. And you need to stop going every day.

You are not doing your husband any good by doing those things. And you certainly aren't doing yourself any good either.

In any nursing home, as long as the family is present, the aides and nurses will allow the family to do as much of the care as they want to do. For your husband to really settle down into the nursing home's procedures, you need to allow them to take care of him.

And you need some respite for yourself. You need to go somewhere for a weekend, or even better for a week, and let them take care of him and begin to take care of yourself.

I now only see my husband every 5 to 7 days, and I don't stay long. He doesn't know I'm there when I am there. I go in, not for him, but for ME. I need to see him and know that he is being cared for. I make contact with a nurse, or an aide, or both EVERY TIME I'm there. I ask intelligent questions when I have them. I track his weight. I deal with the business office.

When I got sick this winter and could not come in for 6 weeks I returned to find him clean, well cared for and still stable as far as his weight went. He was further along in the disease but that would have been true if I'd been there every day.

These days I work on me. On my own health. My own doctors' appointments. My colonoscopy. My cardiologist tests. And dental work. Lots and lots of dental work that sat there for years while I took care of my husband when he was home.

I have not abandoned him. I've accepted that I can't take care of him anymore. And allowed others who can take care of him to do their jobs.

One more thing. You are in mourning. I was too. I wasn't a loud mourner. Not much crying. But I was sad a lot of the time and I wasn't interested in what used to interest me at all. And I could force myself to take care of those parts of business that HAD to be dealt with, but no further than that.

You asked "how long". I am essentially a widow. It took the better part of a year, but I was working on it. I saw a grief counselor from the hospice my husband was on, for example. I have a support group that includes widows and I write to them every day and have for more than two years now. They were with me when I placed my husband. They were with me before that and they are still with me. So I have people to talk to.

I know that when he dies, and that could be days away or years away because of how he is now, I'll mourn again. But now, I'm out the other side of the tunnel for the most part.

That could be true for you too, but not unless you accept that he isn't home anymore and begin to rebuild your life. If you can't do it for yourself, do it for him.

If you die first what happens to him?
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: DLMifm

quote:
Originally posted by Cathy J. M.:
One thing that's clear is that there's no one right way! At one extreme, Jim Broede spent most of every day at the NH with his wife -- for years till she died. He was happy. Starling goes once a week, her husband does fine, and she's happy. I've read forum messages from lots of people somewhere in between -- visiting two or three times a week. One thing all have in common is that when NOT at the nursing home, they refresh and renew themselves.

So it's a matter of finding the life pattern that works for you and your husband, and finding ways to refresh yourself between visits.

THANK YOU !!

We are all unique. My wife and I visited her sister (AD) when she was in a nursing home. We watched her decline. It gave me some insight as to my LO's scenario when NH time arrives.

This thread is timely. I'm a worry wart and for some reason I wave been mulling how I will visit her. Not that this is pending. Just me sorting things out as I go to sleep. I had visions of being with her 24x7 much the same as I am now.

I need to re visit local nursing homes now that I have read posts by forumbudds. I hadn't asked about rigid daily care routines.

One local nursing home administer said off hand her patients were usually there three years. Hmmmm. No matter what it will be a major adjustment and I'll feel less guilty because I read "...there's no one right way!" from someone who's advice I value.

Thank you Cathy J. M.

DLM
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: D Steinhauer

Dear F.A.R. This past Feb, I too was faced with the same delema. My sweetie can still "walk" arround, but also talks with broken words. It is painfull to watch him have "something" to say and not be able to get his thought out. He does know me, but not other family members. I am SO alone with this. No one else visits. I too go EVERYDAY! I go there at 10AM and walk him back to his room after lunch to hopefully nap. I then leave. I have not missed a single day. I IS very hard. The cost of gas alone. I still leave in tears every time!It's been 5 months, I just went to a nephew's wedding Sat. My 1st anything without him...so very hard! I did pretty good till at the reception the Garth Brooks song "the Dance" played..."I could have missed the pain, but I would have missed the dance"...I lost it then. That kinda sums this up. I would have not traded my sweetheart and 26 yrs of marriage just to avoid this now. I take my vows to heart. I know he would also, without a single doubt. We have delt with several "issues" at his nursing home. The point is I am there everyday to see and address them. If he could speak it would be easier he could ask for his self, but he can't!Just yesterday he focused on one lady who visits her mom alot. He wanted to "talk" to her. I did not know why, but we went to her and he tried to ask how much longer will he need to be there? She is so very kind, I was able to lead her answer to say we're trying to make medicine adjustments that he needs. He was ok with that. Why he thought of her as his "answer" ???? He has been asking lately about going home. It was just too dangerous here for him. The home health nad social workers had been working with us for a long time to get me to this point. Hardest thing ever! Please keep in touch. We have so much we can share.mimidebb@bellsouth.net
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: Twinie

I too just placed my husbnad, 61 years of age in a memory care facility. It is like a home with 25 residents and clean like my own house. I looked for 5 weeks and found this place 25 minutes from my house. An internet non- profit company called "A Place For Mom" was instrumental in helping us. My son found this online. Just google it. They called me everyday with lists of places they recommend in the area and still call me to see if I am OK. I cry every night and feel guilty. A heart attack over a month ago made his dementia worse as he became combative. Medication has now helped. My therapist/social worker told me this week I have no right to feel guilty but I do have the right to feel sad. Good luck to all. Sheryl
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: Cathy J. M.

One thing that's clear is that there's no one right way! At one extreme, Jim Broede spent most of every day at the NH with his wife -- for years till she died. He was happy. Starling goes once a week, her husband does fine, and she's happy. I've read forum messages from lots of people somewhere in between -- visiting two or three times a week. One thing all have in common is that when NOT at the nursing home, they refresh and renew themselves.

So it's a matter of finding the life pattern that works for you and your husband, and finding ways to refresh yourself between visits.
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: terromari

[QUOTE]Originally posted by Starling:
The first thing you need to do is stop spending four to six hours a day at the nursing home. And you need to stop going every day.

Sorry,I disagree.My LO is in a NH, has been since October. I am now able to go every day and I spend 3-4 hours a day, sometimes more,and I need that time with him as much as he needs it with me. BUT, he is communicative, knows me, can sometimes stand, goes to exercise with me, goes to activities with me, and we sometimes go out to eat (paratransit is great). So maybe our situations are different, oh, and we are not married but have been together for 16 years. He has been the most caring, helpful, funny and loving person more so than the snake I was married to for 31 years was. I miss him and cry when I leave, but look forward to seeing him the next day. I do things for myself as well,have hobbies, go out a little,and do agree we need to rebuild our lives (although I did not do that at first). But it is truly hard for me to miss a day with him, and if he could walk safelyh, I'd have him home. Just my opi8nion.
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: Starling

quote:
Originally posted by Cathy J. M.:
[snip]One thing all have in common is that when NOT at the nursing home, they refresh and renew themselves.

So it's a matter of finding the life pattern that works for you and your husband, and finding ways to refresh yourself between visits.


Everything you said was very bright. We are all different and it isn't necessary for anyone to do exactly what I am doing, BUT if you are miserable you just might need to do something very different from where you are.

The part of the quote I left is VERY IMPORTANT. If you are miserable you aren't doing this part of the job. We all need ways to refresh ourselves. And it is essential if we are to stay the course to the end.
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: Starling

quote:
Originally posted by Twinie:
[snip] I cry every night and feel guilty. [snip Sheryl


You are mourning. It is OK to mourn. It isn't much different from mourning someone who has died because you have the empty house and all of the other Widow Issues to deal with right now.

You feel guilty that you aren't superwoman and needed to place your husband. It is normal. I felt that way too.

I dealt with the guilt in two ways. I reminded myself why I placed my husband every time the guilt came up. I had medical personnel at the ER who made the final decision for me. If you had a doctor involved in the decision remind yourself that you didn't make it just for your own needs, but for his too, and that a doctor helped you make that decision.

In my case, and probably yours, it was no longer safe for me to have him at home. Not safe for him (he took off one day) and not safe for me (he attacked an aide in the ER and the nurse checked me out because she was sure he had attacked me in the same way and she was right).

He is safe where he is. He is cared for. He is clean and fed. There is no longer any quality of life, but that would have been true at home too. He is a fall risk and has been found on the floor in the nursing home. They can get him back in bed. I could not.

It is what it is.
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: terromari

[QUOTE]Originally posted by Starling:
terromari, if spending hours every day in the nursing home with a spouse who can communicate and interact with you is working, then that is what you ought to do. Especially if it is making you happy.

Sorry, didn't mean to be critical. But he is alert, communicative, much like his own self most of the time. And I want to be with him as much as I can now because when things get worse I don't want regrets. I miss having him here so much.
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: Starling

terromari, if spending hours every day in the nursing home with a spouse who can communicate and interact with you is working, then that is what you ought to do. Especially if it is making you happy.

The person who started this thread is going, and staying, not because it is working and making her happy, but because that is what she thinks she should do. She is miserable and sounds like she is falling apart. Most nursing home caseworkers would suggest she go home and begin to put her life together, see her own doctor and begin to take care of herself.

When my husband could communicate I went much more often, and stayed a lot longer. I would leave if I saw that my being there was making him more agitated. When he was calmer and would let me hold his hand, even though speaking was no longer an issue because he couldn't, I'd spend long periods just doing that.

Now I go in, check that he is OK. He is almost always asleep, so I check in with a nurse or aide to make sure they don't need anything from me. If he is awake I pull up a chair and stay longer. But basically, I'm there for ME and not for him.

At this point I guess I could bring a book and stay longer, but there really is no reason to do that. HE isn't there anymore. Instead I'm his advocate and I'm spending hours on paperwork, Medicaid applications, and going to care conferences and making contact with hospice. Oh, and my own medical and dental situations that were on hold while I was a hands-on caregiver.
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: hacky

Hi, I just placed my husband of 57 years in a NH today. He is probably in a 5-6 catagory with alz. He is a very gentle, kind, loving person but was becoming very hard to handle in the evenings. He would want to go home to his parents (both dead) and to the house where he lived with them. And he would become angry if anyone disagreed with him and said they were deceased. I'm not sure when to go see him, how long to stay, what to do next. I just called and they said he was trying to get out the doors and go home. I'm afraid if I go in now so soon it will make it worse. Any ideas?
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: Starling

terromari, that was my point. What you are doing is working for you. You are happy doing it. He is happy having you there. It is the right thing to do while all that is true.
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: *Linda*

Welcome, Hacky, to the discussion forums. I am sure you will find them as useful as I have.

My mom has not been placed yet so I do not have an answer as to when to go see your husband or how long to stay.

What I can tell you, from my personal experience with my Mom is not to disagree with them. The best way to respond to those questions of wanting to go home is with loving fibs: "We will go home tomorrow" or "the house flooded and it needs to get cleaned out first".

Regarding the questions of his parents being alive, his reality is that his parents are alive. Go along with it. Don't disagree. Say "we will talk to them later" or "I will let you know when I hear from them." Validating their reality reduces conflicts and anger.

Best of luck.
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: JAB

Hi, Hacky, welcome to the forum. Like Linda, I've been fortunate enough to be able to keep my husband home, so far. I know some people recommend staying away for a week or two, to let the loved one settle in and adjust. Others think it better to visit frequently, so they don't feel abandoned. I think it probably depends on you, and your husband, and how good the NH staff are at calming and redirecting him.

If you do visit, you may want to do it early in the day, when you're both more likely to enjoy it. Plan the timing so that he is engaged in an activity he likes, or is eating lunch, when you want to leave. And you might want to ask the staff to help distract him when it's time for you to go, so he doesn't see you leaving.

I'd suggest that you read Jolene Brackey's book, "Creating Moments of Joy". It's great -- full of very practical, simple advice on how to make our loved ones feel loved, happy, and safe:
http://www.enhancedmoments.com/
Click on "Products" and scroll down.

And you may find Jennifer Ghent-Fuller's article, "Understanding the Dementia Experience", very helpful:
http://alzheimers.boomja.com/A...xperience-59731.html

You might also find some helpful tips in this article on sundowning:
http://www.alzcompend.info/?p=268
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: JAB

Oh, Hacky ... ((((hugs)))) You'll be second-guessing yourself forever, no matter what choices you make. That's the nature of the beast.

Give it a little time. Many of our caregivers have discovered (much to their chagrin) that their loved ones absolutely thrived once they'd adjusted to the nursing home. You're just one person and, judging from how long you've been married, not exactly a spring chicken. You needed help caring for him -- you know that -- and have had the good sense, the compassion and selflessness, to bring in a team of experts. And with all those people to help you by doing the "heavy lifting", you'll be able to focus your energies on providing the love.

Start thinking about what you can do to make your visits with him enjoyable for the both of you. Is there music he'd like to listen to, are there photo albums or picture books you could go through together, games he'd like to play ... ?
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: hacky

How do I keep from second guessing my decision? How do I tell myself that what I did was right and necessary? I'm a basket case. HELP!!
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: Starling

hackey, just a few suggestions. My husband is in a nursing home and when he first got there a year ago he was exist seeking.

From the sounds of it your husband is exit seeking and he is in a nursing home because it is no longer safe for you to have him at home. I was lucky. I got TOLD that by an ER nurse followed by a doctor, neither of which were willing to let me take him home with me again.

Let me be the person who tells you that your husband is in a nursing home because IT IS NOT SAFE, for him or for you, for him to be at home. We didn't luck out, you and I. Our husbands won't die at home.

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.

Talk to someone at the nursing home about how often you should see him. I've known people who were told to only visit after about a week so they would calm down. I've known other people who successfully visited every day, including me, and I know one person who because of her own medical condition couldn't go to see her husband for 6 weeks. In every case the patient settled down to the fact that they had a new home.

If they tell you to stay away for a few days or a week, listen to what they are telling you. They are the one with experience with cases like his. And his case is not the same as any other case.

My husband's nursing home has set up a situation where nothing the patient does will get them off the floor they are on without help. If they open the safety doors, the doors sound an alarm and only open after 30 seconds of an alarm. The patients give up well before 30 seconds. The elevators won't work without a code, and it isn't the code visitors use to bring an elevator to that floor. The result is that the staff never has to tell the patients no and they calm down and stop trying to leave pretty quickly.

I know how hard this is on you. I've been there. I understand that you aren't sure if you are doing the right thing and that you feel a lot of guilt that you aren't superwoman. I've been there too.

Please remember you have to take care of yourself too. That you have the right to be taken care of and to know peace, quiet and even a little joy now and then.
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: hacky

Thanks Linda and JAB. I took my husband to the home this morning and stayed for awhile and then was back in the afternoon. He called me in the evening. He is lost and sounds so pathetic. It is very hard to bear. The nurse said they are that way when they first come in. I just hope it doesn't last too long. I will read the two articles and thanks for listening.
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: terromari

quote:
Originally posted by hacky:
How do I keep from second guessing my decision? How do I tell myself that what I did was right and necessary? I'm a basket case. HELP!!


I guess it just takes time and a lot of tears. I am not conservator for my LO. We were not married, and I just couldn't face what was happening. His sisters took over, and placed him after the drs said he could not come home. I beat myself up everyday about not taking him out of the VA a day sooner before he started being combative. But that could have happened here. I am just so sad, and miss him so much that I have to trek up there everhy day. The past 3 days he's had the poopies, so I've been there making sure he eats the right stuff, that he has company, etc. I hate to say this, but if didn't go no one would. His sister is dealing with a significant health issue in her own family and can't deal with both, so it is just us, and I just can't leave him alone there. I just love him so much and wish I had other options. But I keep praying.
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: terromari

quote:
Originally posted by Morgan R:
Terramori,
I feel exactly as you do, however my husband can no longer communicate and I find that even more a reason that I need to be there everyday.


That is my story and I'm sticking to it.


Hi. You do know that is a line from a country western song -- and we were country western dancers for 15 years, met in a country western dance club. Yes, I've seen stuff, but not a lot. As he can communicate, and remembers some stuff, I need to see him to continue our relationship because I am devastated here without him. I know it may not be healthy, but there it is. As to taking him out, I can't even get his sister to answer my emails because of what's going on in her family right now, and I am not calling to add to her stress. But we do go off the floor to activities (except now becaue he has the poopies) and outside on the grounds which are very nice. We are going to do a pizza party with another couple there (he is there, she is a visitor like me) once my love feels better. Just praying for a cure before he slips too far. Doing my best.
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: terromari

[QUOTE]Originally posted by D Steinhauer:
Dear F.A.R. This past Feb, I too was faced with the same delema. My sweetie can still "walk" arround, but also talks with broken words. I am SO alone with this. No one else visits. I too go EVERYDAY!

I did not place my sweetheart. His sisters stepped in and helped ( we aren't married) when drs said he couldn't come home, but also said sometimes when pts go to a good facility meds are adjusted and sometimes they do go home. I held out that hope even though my love is not walking after treatment for blood clots that were ignored at the VA hospital where he spent 4 months. We walk him some, but I guess he will never be ambulatory. Still, I would like him to be able to transfer so I could take him for a ride in the car.The other day he said he wished he could go for a ride in the car and see the beach. Can't transfer him, though, and now his sister's family has a serious health issue and she doesn't want me taking him out on paratransport without her first seeing how he is (I've taken him out, no problems, always with CNA). It will be a long time till she will be able to participate, so it seems like she is punishing him. But since she is conservator, and did a lot for him, what can I do. I wish things had been different, that I had lost my job sooner so I could have tried bringing him home. He is good when I am there, but I am sure there are behavior issues later. So I, too, cry on my way there, on my way back, at home, and if I do go out I just think how much more fun it was when he could go, even though he was slipping. He will always be my sweetheart, and I will always be there for him, and yes, I try to be there every day because it is surprising what things do slip if unnoticed.
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: Cathy J. M.

quote:
Originally posted by terromari:
but I am sure there are behavior issues later.


As I understand it, only a minority of people with AD develop behavior problems. It seems like more from reading the forum, but that's because the problems get more posts. So your dear husband may never pose any behavior problems.

Is he getting any physical therapy there in the current NH? Or did doctors agree that PT just couldn't possibly help him?

Would his sister accept the NH nurse's assessment of how he is, so you can take him out on paratransport?

I'm with you all the way!
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: Morgan R

Terramori,
I feel exactly as you do, however my husband can no longer communicate and I find that even more a reason that I need to be there everyday.

People would be amazed at what slips by unnoticed if you are not there. I saw an aid not even give the man in the room with my husband and opportunity to eat his food, she asked if he wanted his lunch, he asked what it was, she said Tuna, he said I don't believe so. (Now we all know that there was more than just tuna on the plate.) She turned and left the room, the man is bedridden. I asked her if she was not going to sit the food down and let him see if he wanted to eat, she said NO we don't force feed. I told her that was not force feeding, that was not even giving him a chance to eat. I was so angry, I reported her to the Nurse, she was later fired. If that happend one time while I was in the room, can you imagine what happens when we are not there?

Just because my husband no longer knows me does not mean he no longer has feelings, I will be there everyday as long as I can and I could not have the heart to do any other way.

They are as helpless as a baby and you would surely see after a baby every day or make sure someone was there in your place.

That is my story and I'm sticking to it.
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: hacky

Thanks to all of you who have posted answers to my dilemma. I'm trying to get through it and know I will. But right now it hurts. Thanks for everything.
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
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.

My experience is different. I was sick for six weeks this winter and could not visit, at all much less every day. I did set up situations where there would be eyes other than mine. He is on hospice. I got my pastor to go visit. I have neighbors who just dropped in to check things out.

But my experience is different. I found him clean, and cared for, with his weight stable after 6 weeks.

By the way, if a tray had been returned to the kitchen with zero eaten, that would have rung a bell in my husband's nursing home. EVERY tray gets logged into their computer with an estimate of how much was eaten. If eating goes down, much less to zero, the dietitian comes up, the head nurse checks things out, and they try to figure out what is going on.

When my husband kept losing weight one of the nurses took over the feeding and recognized that my husband had hit a new situation and they got his food changed so he could handle it. And they started feeding him manually at that point as well. At that point they were weighing him every week to see if anything that they tried was working.

It is possible not to be there every day and still know what is going on.

If going in every day works for you; if you are happy and the patient is happy, then that is the right thing to do. But if the patient gets agitated if you are there all the time, and you are miserable, then it isn't the right thing to do and you have to come up with other methods of taking care of the situation.

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.
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: hacky

My husband just called me from the NH. No nurse or supervising person was there to monitor his call. He was wanting me to come in and get him. He said they threw him out of his room and all his clothing, too. I couldn't get to talk to a nurse. This is very disheartening to me. When I'm already grieving, it is hard to have him call and want to come home. Any ideas?
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: Jim Broede

When I put my dear Jeanne in a nursing home, the first day was the worst. Then it got better and better and better and better and better. One can learn how to adjust and cope and make it work. In wonderful ways. Take it one day at a time. --Jim
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: terromari

quote:
Originally posted by Cathy J. M.:
quote:
Originally posted by terromari:
but I am sure there are behavior issues later.


Is he getting any physical therapy there in the current NH? Or did doctors agree that PT just couldn't possibly help him?

Would his sister accept the NH nurse's assessment of how he is, so you can take him out on paratransport?

I'm with you all the way!


PT is a drop in clinic after lunch, which is another reason I am there every day (they won't take him for me) -- sometimes he is more cooperative than others. As far as scheduled PT, even though I saw him walk, they claim that he does not have potential (I think they just want him in a chair, but that may safer). Replied to other post re sister -- she is not answering my emails and I am not calling because her family is facing a serious health issue right now and I can't in good conscience hound her if she feels she can't deal with her brother right now,
Anonymous
Posted: Tuesday, January 17, 2012 4:48 PM
Originally posted by: Cathy J. M.

Starling, how did you find such a good NH in an emergency situation? Or did you have it picked out just in case, earlier? I know I should have a "NH backup plan" in case something dire happens to me, but I keep putting it off.
Anonymous
Posted: Tuesday, January 17, 2012 4:49 PM
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.
Anonymous
Posted: Tuesday, January 17, 2012 4:49 PM
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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