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One year anniversary in the nursing home


RLT

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My husband’s one year anniversary in the nursing home was last March 13th. I had decided that then would be a good time to update my blog but every time I start to write I get distracted or plan frustrated because I cannot seem to get all I want down in black and white. So while I wait for my night time meds to kick in maybe I will be successful in updating our lives.

 

The decision to place Dick in a nursing home was not an easy one. I think I fantasize about bringing him home at least once a day. In other words I am still overwhelmed by a sense of guilt that I am not keeping him at home. I was so determined to care for him myself but as the years past, that decision began to cost me my own health to the point that I was no longer able to care for him. I keep hoping that I will get my strength back enough to bring him home. But the reality is that over the last year his condition has deteriorated considerably. I honestly do not think I could really pull it off even if I got my back stronger.

 

I knew going in that he would never be cared for as well in an institution as he would at home. I assumed though that his basic needs would certainly be covered. Reality seems to be much different. The most positive thing about the home he is in is that it is only a half mile or so up the road so can be there if there is a crisis within minutes. It is true that I have more time to myself so I am able to go to physical therapy and doctor appointments for myself these days.

 

Still I feel that most of my time is taken up with Dick’s care. For much of the past year I have spent several hours a day with him. Instead of taking part in the few activities available for the residents, Dick tends to stay in his room all day. He really hates the place and frankly I don’t blame him. My visits are the only thing good in his life. Of course this makes me feel badly the days that I am unable to get over there.

 

Visits have gotten increasingly awkward. After the first couple of weeks, I frankly ran out of things to talk about. There are too many things I must not bring up because they make him feel he is missing out on so much. For many months then, I read to him. He would often have the book out waiting and would hardly let me sit down to read because he was so interested in the story. During that time he had a sweet roommate who was unable to talk due to a stroke. He was rarely in the room but when he was there both men got a kick out of listening to the story. That roommate passed away at the beginning of the year.

 

Then came a series of new roommates. The first was an Alzheimer’s patient from a large Italian family. Someone was always visiting and they were always loud so we could not hear ourselves as we read. That roommate was moved after he beat Dick up and Dick landed on the floor. Yeah, not too pleased about that one. Anyhow, the story reading had to be stopped for a while. By the time we got back to it, Dick was no longer able to follow the stories.

 

We watched TV together for a while then until the shows became too hard for him to understand as well. So we are back to talking. Conversations are difficult for us because of Dick’s aphasia. Over the past year the mouth and tongue muscles have deteriorated so much that he cannot form the words that he does know. I guess I get maybe 5% of what he is saying. Sometimes my interpretation is so off base he looks at me as though I am crazy!

 

To further explain things, Dick’s initial strokes left him right side affected. He has gotten increasingly weaker. And now his vascular dementia has gotten much worse. It is difficult to figure out what he is thinking about because his aphasia makes his expression of thoughts unclear and he can suddenly return to a topic that we had moved away from and it takes me a while to realize that we are not even on the same subject.

 

All these communication problems make visiting difficult for me. I want to make them special but so often we both end up frustrated.

 

THEN the battles that I have to deal with just to get Dick’s basics needs covered are never ending. Some are big issues like making sure he gets showered. Some are financially difficult because his clothing is constantly being lost.

 

Sometimes just the act of walking into the building has me grumpy, angry and ready to make heads roll. I expect that Dick be clean and groomed. Instead when I take his socks off I find that they have imbedded into his skin because they have not been changed in over a week. He can go a month or more without a shower unless I haul him in and do it myself. Why? Because he has the right to refuse. So the shower aide comes in on Wednesday and asks Dick if he wants to take a shower. Dick (of course) says, no. The aide is happy because that is one job that doesn’t have to be done that shift. The same thing happens on Saturday. Unless I intervene this will continue and he will go without a shower.

 

THEN you have the aide come in and ask if he wants to use the toilet. Dick’s response is, no. Of course, he has been incontinent and NEVER feels the need to go to the bathroom. There might be an aide on the ball who will ask if he needs his pull-ups changed. Dick doesn’t feel the wet so again answers, no. Happy aide goes off without having to do that nasty job. Then I come in and find Dick soaked through pants, bedding and/or chair. Then I am the one who ends up changing him only to find that he is bright red and close to skin breakdown.

 

Dick’s original tube of toothpaste from over a year ago is still almost full! He has lost several teeth and I cannot get them to sign him up for dental care. I regularly find his fingernails crusted with poop. And I am the only one to get him to shave. I also am the only one to cut his nails or make sure he gets body cream. I had to take all his sweat shirts home because even with weather in the 90s they are still dressing him in the sweats because they are easy to put on.

 

And talk about clothing. I have taken three or four completely new wardrobes in for Dick. His clothing is all labeled with his name but still his clothing is regularly lost. I finally started taking pictures and supplying the home with a photo inventory of everything I take in. But this week I have to force them to compensate for all the clothing lost since late last year. ARGHH. This week I must go through the photographing and doing an inventory of summer shirts.

 

Oh and I have to mention that Dick has control of the heater in his room. For reasons that only make sense to a demented mind, he likes to turn on the high heat. It is slowly cooking him and his roommate but I cannot get anyone to prevent him from doing it.

 

OK so this is a whiny rant. And while this is just a fraction of the things I deal with these days you can easily understand why I want to bring him home so badly. But it then it becomes a matter where I am not being taken care of. I simply cannot physically handle the lifting I was able to do a few years ago. And if he is at home I cannot have the ability to retreat when his words cut me to the core.

 

You see, dementia has taken the most wonderful caring man and turned him into someone who is incapable of understanding the needs of others. He can feel bad if he knows I am upset and he is the cause (so I know he still loves me and wants the best for me) but he cannot understand how he hurt me. He now does things that seem quite cruel but they are simply that he does not have the filters anymore to understand what his words and actions do to other people. Knowing this doesn’t stop me from feeling the pain. Then I get impatient with myself for my response. Sigh!

 

After reading all of this to my daughter she felt that it sounded really depressing. I don’t want it to be depressing. It is the way things are. Not perfect. Still somehow we keep going on and try to treasure the precious moments when we really area able to enjoy each other.

 

Over the past year I have struggled with the idea that I had thrown in my caregiver status. That I was a failure and looked down on by those who are still caring for their loved ones at home. The fact is that my job has just changed. I don’t worry about having to get up in the middle of the night. And I can steel a day to go to the beach with my girls. But I have taken on the necessity of trying to get the nursing home to provide at least the minimal care for him. I’m not so sure that it is any easier other than at least some of the heavy lifting is done by others. Therefore I find I need support just as much as I did before.

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It sounds to me like your job since placing him in the nursing home has become much more stressful. You may not be doing the physical hands-on caring that you did at home, but when you're paying a nursing home the kind of money they charge these days, it seems ridiculous that you should have to do any of the hands-on caring (bathing, changing, etc.). I think I'd be filing complaints with the state.

 

We checked out the local nursing homes before Gary went to rehab, and after what I saw in most of them, there was no way I'd be able to place him in one locally. I know that I cannot do the full-time care at home forever, as seven years of the lifting and doing everything for Gary has definitely taken it's toll on my body and I'm not getting any younger. That was one of the primary reasons I wanted to sell our home and get out of this county, and head south to warmer weather. Unfortunately, with the economy and housing market the way they are today, that's not happening.

 

I hope and pray that you are able to get the nursing facility to make some necessary changes to reduce your stress level and give you some assurance that he is being care for properly. If you can find the time, please try to pop in to one of the caregiver chats , either Tues. at 8 p.m. EST, or Thurs. at 8 p.m. PST and join in the conversations. I think what you have learned from your experience would be a great help to others who may be forced to make the same decisions.

 

(((((((((hugs))))))))) to you and hope your own health improves.

 

Sarah

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you mentioned running out of things to talk about while visiting Dick. I came across an idea the other day surfing the net. I not only care for kitty a 10 year survivor but I also assit helping with my father in law who has just started the road to recovery. The idea I came across was to reminess with them. I haven't tried it yet as my mother in law has not needed me to come sit with him while she runs errands. I do plan to try it first chance I get. I will let you know how it goes.

 

mike

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Ruth, Dick's aphasia and your interpretation yes is frustrating for the both of you. I say it is like playing charades and I'm bad, bad at that game. We need to know the subject they want to talk about. Out of the blue subjects leaves us doing a bad job guessing. As for Dick answering no when asked a question. Aphasia has turned the persons brain upside down. Yes means no, no means yes. and if that aid doesn't put herself concerned to understand that of who she is to take care of Dick goes without. And the aid doesn't care for it's less work for her.

My mother was put in a Nursing Home so I understand what you are saying. My mother only lasted their 1 week she was sent to the ER, after that she went to a Hospice. Hospice is night and day to a nursing home. It was such a difference, of course my mother was in her last days on this earth. I feel for you.

Ruth you made the right decision putting Dick in a nursing home to take care of him. You provided Dick with care as long as you were physically able to. It was time. You can look back at the good memories you had together and not the struggles taking care of him at home.

I am happy to her you are moving forward, changing the house up.

It's good to hear an update from you. You hang in their, were here to support you. remembertolaugh, Jeannie :cocktail:

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I honestly want to cry thinking about how hard this must be for the both of you. My husband had a stroke on christmas morning and He's back to work. A little slower but he's managing. It's amazing how life can completely change in an instant. I wish you both the very best. I think you made the right decision. You can only do so much. Lori

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I remember you discussing placing him in a home on the message board and I made my comment at that time. The employees hired by some of these homes were discussed and the need to check up on them as often as possible to see that he gets good care.

 

I hope things will work out more in due time! My prayers in his care will be asked of the Father! Fred!

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Ruth, I was told tonight in hospital that they may be able to get Ray to walk again but if not would I please start looking at nursing homes?

 

Ray has had another recent stroke and is in hospital tonight with a chest infection and impaired kidney function. Not good.

 

I too ask you keep up with your blog as some of us are surely facing that decision ourselves and need to know how to fight to see our loved one gets the best on offer.

 

Sue.

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Ruth: print this blog out so you have a reference and then schedule an appointment with the Director of Nursing. You probably already have done that, but do it again. Then look upon line for the State Advocate for the Nursing homes in your state. The Nursing Home should also have it posted in their lobby or ask the director of Nursing for it. This care, or lack of, is unacceptable. Neglect and abuse are the big topics for SNF Regulators this year. And their definitions of neglect and abuse are very broad. Make a phone call to the Advocate.

 

Be there on his shower days, put on his call bell and tell the shower aide that Dick is ready to take his shower when she is. You are there anyway, just change your times. Sit there until he is put in the shower chair and taken off. Mention to her also that he will require a shave at the same time. When you get there and he is wet, again put on his call bell and tell the responding aide that he needs changing and again sit right there until she cleans him up. Do Not start any care yourself. See if that helps. If they do not return promptly, put the call bell on again.

 

You are on top of the clothing issue. Sorry to say, but keep it up. Remember the squeaky wheel gets the oil!

I'd come in and find Bruce wet, because it was no to everything while the man across the hall sat in the hallway with towels he retrieved himself, shouting for his daily shower. And guess what, he got it! Our men can not do that but we can and must.

 

Mike had an excellent idea for communication and I am sure you have photo albums that you can bring along. I often take out our collection of photos-we don't have a lot of albums, but lots of packages and I pick one out randomly and we go through them. Tell him of your day, where you went, what groceries you brought, what new recipes you are trying, life in the yard: plants, birds. What the neighbors are up to, discuss your errand list for the week. Just the day to day stuff. Best and know you and Dick are in my prayers. Debbie

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Thanks all for the wonderful feedback. It is certainly helpful. I have indeed spoken with the Director of Nursing many times. I have the state ombudsman's number in my bag but have yet to call. When I talk to the DON they seem to poke at it with a stick so to speek and I always feel I need to give them a chance if they respond positively. Dick's showers are on Wednesdays and Saturdays. They have asked me to be there to override his "no". That is always a way to get things done. But I cannot be there all the time and the neglect takes place when I am not there. I have been showing up at unexpected times so have caught them when they did not expect to see me. Bottom line is that I squeek a LOT and things happen when I do but it requires stressfull diligence.

Conversation is a tricky thing when dementia raises its ugly head. I have taken in albums only to have him look at them blankly and not remember any of the events. Usually you expect short-term memory to go first and move backwards in time. With Dick, it has not worked that way. He can forget this morning and remember yesterday. He still knows where our house is (we have only lived there since stroke) and cannot remember his most exciting travels. And it varies day to day. Then I never know what of my daily activities will cause him distress. It is a crazy game to play.

Ruth

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Ruth: take a breath. You must prioritize. One thing at a time. We are not criticizing you, just trying to offer some suggestions and we all come at this from a different slant, so seems like we are ganging up, we are not.

 

You must file a complaint with the Omsbudsman. This is the only way you will get some action. Dick's care can not be any worse, so just do it.

 

Number two is his hygiene. Shower and shave at least are Wednesdays and Saturdays. You need to reschedule to be there during those shifts, let the aide know you are there and when he gets put in the shower chair-leave. Those times when you visit at random, check his bottom, if wet, put on the call bell.

 

Lastly, ask for a Psych evaluation. You may be dealing with Alzheimers and not Dementia. Worth a pro looking into it.

 

You are both in my prayers and thoughts, Debbie

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It never crossed my mind that anyone here might be criticizing, Debbie. I rather expect all of us are wandering around in this roll of caregiver without any real preperation so in our stumbling around we at times stumble on really good ideas. Sometimes they work sometimes not but often hearing what others have come up with sparks a new angle of thinking for me. There are a lot of things I have all ready tried but I am sure that there are millions I have not even thought of. I do plan on talking to the Omsbudsman. And I am always reassesing whether my expectations are too high. I figure this is a good source for that kind of feedback as well. Thanks again.

Ruth

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Ruth: of course, you are right. I love throwing things out to the group. So many new ideas and angles to look at. I always think back to Lenny's suggestion of how to teach Bruce to put on his own pants. Something we are still struggling with, but nothing like getting a suggestion from someone who has been there. Not just me, guessing.

 

I remember when Bruce was in Sub-Acute, nothing like having a patient who's significant other and POA is a Rehab nurse. And I know my place of employment is exceptional, but it is not flawless. I often say to complaining family members, no place can be 100% right for everyone. But if you offer suggestions, I may be able to help resolve them.

 

In your case, honey, it seems only reprieve you got was bed time. This is not acceptable. He must be changed, turned and repositioned every 2 hours, out of bed daily in his own clothes, therapy as ordered. His basic needs are not being attended to and that is their license!

 

Last thing I wanted was to cause you more stress. You already have enough. You are working very hard to be able to take him home and that should be your focus. If there is any chance, you know what has to be done. By having to worry if he is sitting in his own pee for hours is just unacceptable. It would make any caregiver upset. I just hope you can get some resolution to the very basic requests you are making, so that you can again focus on your health and getting him home. Debbie

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Ruth,

I do agree you need to complain and bring this up to the state. This is unacceptable.

Showers twice a week...that is minimal. I think of showers as therapy...expecially in this warm weather. Water makes a person feel good. It is good to get out of the room and move into a shower chair. It is good to have the bedding changed and the bed aired out awhile.

I like to ge the room and the person nice an refreshed.

A nursing home is a nightmare. I can imagine all of the obstacles that you are encountering.

Yes lazy help will certainly jump at any no. Just makes their day easier.

Squeeky wheel needs lots of attention. get the attention that you need.

 

Ruth

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Thanks for the continued encouragement to "sqeek". I have been rather vocal but I am always afraid that I may tick off the wrong person and Dick will have to pay. I wish there was another option for a place for him but maybe this is typical for the area. This is an overcrowded area and I find people less friendly in general. On the flip side I must say that I do have a couple of advocates on the staff.

Ruth

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