My husband has been in a care center for over a year. He has vascular dementia and physical problems from a broken hip, 3 years. He refused to go physical therapy. We are lucky in that I live about 15 minutes from the care center. He wants me to move in and live there. I try and visit every day and I am so burned out.
I know there are others out there like me and I just wanted to connect. I have to make the decisions(that he always made) as a widow, but also has a wife. HELP
Welcome Bobbie many here are in or have been in the same boat as you. Everyone here gets it. For me my wife has been in care for a year now withearly onset Alzheimers. In the beginning I use to go, felt I needed to go, everyday now I go about 4 times a week. If you burn out you will be no help to him or yourself so please take care of yourself and take time for you it is important.
Others will be along to say hi. There is loads of information here and lots of support. Any questions you have or feelings you want to get out it is ok there is no judgement here.
As Rona suggested - limit your visits. If you are going so often that it wears you out, exhaust you, then you need to cut back. You are paying the staff there to take care of him - so let them. It sounds like you have not let him depend on them vs you.
A major part of a spouse being in a LTC facility is to help relieve stress from the well spouse (this doesn't happen if the LTC facility is poorly run).
If you are burned out from visiting you need to cut back. You don't mention the length of your visits. Some people spend all of their free time visiting their spouse and wonder why they are still stressed. Some spouses do very well visiting every day for hours, they find they do better with their spouse now that they are relieved of much of the day to day tasks and can feel like a spouse again. Others do not feel that way. I am in the latter group.
Another reason to visit less is because your husband needs to learn to bond and trust the staff. Constant spousal visiting can interfere with his process. He needs to learn to lean on the staff and not depend on you. In my wife's first LTC I didn't trust the staff for many things and ended up spending a lot more time with her at her ALF and a lot less time than I planned with our son. Her 2nd facility has much better staff, though it took me a year to learn to trust them based on our earlier experiences. Also, her first ALF was 15 minutes away from the house, her current ALF is an hour father away. Plus this one is a locked down memory-care only facility.
Accepting that you make all of the decisions yourself takes time.
If it is a good facility and things are working out, then you shouldn't need to go so often that it is exhausting you. I agree with those who have said he should be engaging, and depending on the staff and not so much on you. But...when my DH was in Rehab for six weeks in what was considered the best nursing home in the area, and I was thinking he might like it and be able to stay there permanently...he was very unhappy. The staff encouraged me not to come every day, and to let him settle in and feel more at home in the facility. So I did that. Friends who went to see him (my spies) let me know that he was just sitting in his room, unkempt and barely speaking. Obviously he was not engaging, the staff was not doing enough to make him feel welcome and "at home", and frankly, due to short staffing, he was getting a minimum of care and certainly no TLC. My DH was very much a "people person" even though he had AD, and I truly had thought he might like a facility, especially the best one in the area. Well, I was wrong. So my point is--you may need to look for a different facility. If you are a wreck and he is not happy--it may not be you--it may just not be the right place for him.
bobbie, I agree with paulc and Charlotte. Some spouses do very well visiting every day for hours and others feel stressed if they do that. Since your heavy visiting schedule is causing you stress, you should cut down on the visits. Try 3 or 4 times a week and see how that goes.
As far as residents who do not adjust to being in a NH, I don't think that necessarily means they are in a bad facility. Some people are just going to fight being in an institution. (My father was one of those) Before you decide to move your husband, you need to observe the unit carefully and compare it to wherever you are thinking of moving him.
thank all of you. He has been there about 1 year. The nurses and aides seem to like him and he likes them. He just wants me there more. He had the nurse call me this morning and ask where I was. I told him I had told him yesterday that I would not come this morning. He responded "how can I remember, or did you forget I'm crazy". I talked to the charge nurse and she agreed with yall. So I am not going back this evening. It;s just an upside world, with Alz.
for me I have come to the realization that even though Lisa walks all the time and asks about me that is just what she does, a repetitive action. I can be there with her and she will ask me about her husband. I no longer feel I have to be there all the time she has adjusted and yes I got the same feedback don't come so often she needs time to adjust. It took time and It isn't easy but if he likes the people and they like him he is doing well what more can you ask for. I found that going all the time was what I felt I had to do when I backed off yes there still was a feeling of I should be there but that has diminished.
For a very long time my life revolved around her and her needs. I have made the decision that if I have something going on in my life that will come first I will fit my visits around that unless of course there is an issue where I need to be there. Now that is me Bobbie and you have to do what you feel is right for you.
I think that however it is we do it, there is hardship in the steps where we realize it is slipping away.
That can be the steps where we realize we are on our own as never before, the steps where we realize how alone we actually are, the steps where we go back into normal situations and are starkly reminded how much has changed, or the steps where we take on new things in life.
It's almost certain we can't react to those moments with any clarity or insight - and we already have enough to cope with.
I'm talking about all of it. From struggling to take a break once in a while from just being there for them and instead struggle to grasp a hold on the reality of ourselves.
I'm not impressed by any concept that includes destruction of the caregiver while nothing is enough for the sufferer. Yet, to step away even in our minds, those first steps are both very hard and very painful. Yet there is our future, and every step we took when we face that is probably important in helping us then.
You have to strike a balance somehow. Actually, nothing is enough for the sufferer. Alzheimers is a black hole that just sucks the caregiver right in there with the sufferer. More, more, more. You can't do enough. The caregiver has to somehow call a time out and work on their own survival, no matter how feeble the effort is. I mean, for me, as absolutely ridiculous as this sounds, I used to cling to that first five minutes on the screened porch with my cup of coffee in the early morning. I was up day and night, physically and mentally exhausted, but that soul-nurturing five minutes in the dawn coolness, watching the rabbits and squirrels, was what kept me same and got me through it.
I remember after my dad had his stroke my stepmother called to tell me he kept asking for me. Remember this is a man that hated me growing up. She was so sure he really did want to see me. So, being stupid believing he did, we packed the kids into the car and drove the 8 hours. When I got there he had no idea who I was, kept saying "boy, you need a haircut". (My hair was short at the time). I recently found out doing family tree his grandmother's name was Charlotte, so who knows who he was actually calling.
Elizabeth, You are so right. Alzheimer's is a black hole and the caregiver can never do enough. The caregiving will take you down if you let it. And often, the effort the famliy members put out does not benefit for the sufferer much. Charlotte's story is a perfect example of that.
Thank all of you. I have to laugh at myself. I decided I would not go this aft. So I played Mexican Train until 5:30. I was right across the street from the care center and hou know what I ended up doing. But I ws only there about 15 minutes instead of my usual 2 hours. So that is a first step. He looked up and said, I thought you weren't coming again today.
For 5 minutes he is normal and then goes into another world. It is hard to follow. I know you have stories, just like that.
In the beginning of his stay in the nursing home I would go every day for about 4 hours. I did this for six Months or so when, one day, one of the aides, a truly remarkable person, got me alone and told me I looked very tired. Why do you come so often, she asked. Take some time off. I promise we'll take good care of him." I was so surprised. I thanked her, and I listened to her. I began going every other day. I still felt as though I should see him more often but I did it. That extra day for myself felt so good. Later, I began cutting down on the hours I spent with him. Instead of 3-4 hours, it was 2-4. I never actually made it less than 2. When I didn't go he would keep calling out for me, a pet name he used for me. But I miss him so much, even the diseased person he was later. I don't miss the person he was early in that disease. The one who insulted me and told me to get out or who looked at me with "evil eyes." I miss the sweet guy who looked at me lovingly the last time he opened his eyes, the one who held my hand in the nursing home, the one who was sweet, like the guy I married all those years ago. I get tears in my eyes just thinking about that guy.
I'm having some trouble reinventing myself, as someone whose husband died around the same time as mine did said the other day. When will that happen? Am I too old to reinvent myself?
Bev, Tears came to my eyes when I read about your husband's sweet gentle nature in his later years. That's what my husband was like, too. I used to say he was the child I never had. I don't remember him very well as an adult without Alzheimer's, only as the child he was in the NH. I miss that sweet boy so much.
But back to the subject at hand. I visited 5-6 days a week for about an hour and a half max. I paid home health aide, who he knew well and viewed as his pal, to visit one day a week.At some point, he could not remember if I came or not, but I kept going for my own benefit, not for his. It took a lot out of me.
Yall make me feel so normal. If I go twice a day, for about 2 hours, I am a frazzled, always behind, always tired caregiver. If I skip a day, I am an evil, husband neglecting wife. (I mean in my own mind), so what I'm hearding yall say, is I have go grow up and decide what works for us.
Went today and ate lunch with him. It is hard to believe but they sent him SWEET POTATOES-----nearly an end of world event. So he gave it to me (I already had one) and I gave him my green beans (which he doesn't like) and didnt eat. If you don't laugh, you have to dry.
But I am home now, in my play clothes, with my feet up and knitting needles in hand and all is right with the world. Thank yall for all you words and just leting me "feel normal".
Bobbie, IMO, twice a day for two hours is too much because it encourages him to build his day around you. (Not to mention that it takes over your life.) If you are going twice a day, your visits are probably providing the structure for his days. It might be better if you let the NH provide that structure and you fit your visits into it. What about cutting back to once a day?
Myrtle, I think you put it so I can understand. This is exactly what I have been doing. And to turn it around, my life has to be structered around my visits to him. I'm going to try to redo----working thru guilt, obligation, duty, love----may take awhile.
I have blamed him for so much of this. He refused to do rehab after hip surgery and stroke. The therapist said "he was one of my few failures", but to blame a man with dementia for anything seemed so cruel. So in blaming him for it makes me feel so quilty. Does any of this make sense. Maybe I am the one who need the NH. It is like a window has opened--------now I need to try an keep it cracked a little.
Yes, YOUR life may have to be structured around your visits (my life was; I could never get him out of my mind) but HIS life should not be structured that way. That will make him more independent and willing to engage with the program in the NH. Do they have activities there?
I found it helpful to put a white board in my husband's room at the ALF. If something was missing, I would write a note that the aides could see and then when it surfaced they knew where it belonged (unless you've been around dementia units, the number of personal articles that get carried from here to there is astounding). I mostly left messages for the staff and tried to be sure at least 50% of them were positive.
Hospitals now use white boards in the patient rooms so patients and their families can remember their nurse's name as well as other general information that caregivers need to know about the patient like "Going home tomorrow."
bobbie, you might consider a white board to write on when your next visit is: "I'll see you on Tuesday, dear!" or "Wear your favorite blue shirt when I visit on Thursday." That would give everyone one in the unit, including your husband if he can still read, the information about your next visit. It might save a guilt-inducing phone call from the nurse.
Having a spouse with AD is a marathon go at problem-solving.
"As far as residents who do not adjust to being in a NH, I don't think that necessarily means they are in a bad facility. Some people are just going to fight being in an institution." Describes my wife. It took a year for her to adjust. Getting the 2 boyfriends helped her adjust.
Now my wife wants to leave. I feel that this is because a few new residents have upset her. I don't believe this reflects quality of care one of her nurses is vacationing right now for free on the beach. The widow of a resident who died last year offered the nurse the beach house for a week for free as a thank you for her care for her late husband.
Too bad the boyfriends could not protect her from these new residents!
What a nice thing for that widow to do. If I had a beach house, I would gladly offer it to every nurse and aide who worked in my husband's dementia unit. I am so grateful for the care they gave him and for al they did to make him feel secure and happy.
One person is her new next door neighbor. Leannah says she is a moaner so she hears her through the wall. The other is a main who exposed himself (and I am sure they are changing his meds).
I went out yesterday evening about supper time. As usual, the NH is having food problems. He had a barely cooked half potato, and a small piece of chicken breast with"lemon sauce", which looked like white gravy gravy. The potato had one end that was black, I took it back to kitchen and said they could have it. Went to Dairy Queen and got us w "dudes" which were good. They have just gotten a new good service---supposed to be wonderful andis awful. Is that the normal for nursing homes? We live in TX and this food service is out of Michigan. I didn't realize how different out eating habits are. As much as we pay a month, and as much as the residents look forward to their meals-----the food is a shame. Our residents don't want things with fancy names and sauces. Just plain food--that they can chew. Guess this is my rant for the morning.
This sounds very wrong. While my wife complains about her food I've had it. Not every meal is great but it is complete and not fancy. And if someone doesn't like the meals offered they have a number of alternatives which includes food from the Bistro. When I visit my wife we eat at the facility's Bistro (a small food operation that you pay for) and she gets served for free. The food service is run by the operation, it is not farmed out and all people who work with the food have dementia training.
So yes, strongly suggest how they can improve food services. You are right in expecting more.
bobbie: Take pictures of the food, Document, document, document. Take this rant to the administration and ask for a joint meeting with food service. Don't let them bully you or tell you some garbage about transition, residents have different food tastes, etc. Say, "Fix it. This is NOT acceptable. You would not feed this to your family. Why are do allowing it to be fed to these dear people who cannot speak up for themselves?"
If that doesn't get action then you can also send the pictures to corporate. And, eventually call in the newspaper or TV station.
I waged battle with a food service that served sweet potatoes still in their burnt skin, shrimp with tails on, fish with bones in it, muffins with papers stuck tight, spaghetti so slippery the residents couldn't even pick it up with their fingers. Some nights they "lost" the silverware and used plastic. Do you know how hard it is for us to use plastic? Now think of a patient trying to eat a piece of chicken or pie with a floppy fork.
I don't blame you for going out to buy food, but if you do, then you have solved THEIR problem. Don't get mad. But be firm and insistent. Insist that the administrator come to the dining room. We had one administrator who was "uncomfortable" in the unit and never set foot there. Honestly, I don't know who is raising all of these lazy, incompetent, unthinking people.
bobbie, I don't know what kind of food is popular in Michigan, but I doubt it includes undercooked, rotten potatoes that can't be chewed. I think you are letting this food service off easy by attributing its bad food to regional eating habits. There are many food services that are national and international that provide meals to institutions. (We have a friend who worked for an international company based in France that provided excellent meals to a retirement community in NH and to state colleges in VT.) Like the facility paulc's wife is in, my husband's LTC (a state-owned veteran's facility) had its own food service and a small separate sandwich shop (although it was called the "canteen," not the "bistro"!) The food was pretty good, although the cook favored meal combinations that were heavy on one kind of food group, like beans or starch. For example, a supper menu might be hot dogs and beans, accompanied by chili, or ravioli accompanied by New England clam chowder. But the residents seemed to like the food.
Anyhow, I think marche's idea of taking pictures is a really good one. There is no excuse for serving unpalatable food, no matter what it is called.
Sounds like the potato was a warmed up left over baked potato.
Years ago when my sister put her husband in a group home for respite, she took over bananas and the cereal he was use to. Guess what? The group home owners ate and served him oatmeal which he didn't like. For dinner they served fancy meals and wondered why the residents were not eating it. My sister told them - all they wanted was a 'meat and potato' meal, nothing fancy. The home was run by Armenians and thought all Americans ate these fancy dishes. She informed them maybe younger folks do but old folks grew up on 'meat and potatoes'.
This is Unidine-----a new food service for our care center. People from the northern states, do eat their food seasoned and cooked different-----and to a person with dementia, that is bad food. We have met with the food service people, the CEO fro Unideine, the CEO from our hosp, and the manger of our care center. We mostly get, "we are trying, just be patient". We meet with them once a month, and we have had 3 months. A new hospital kitchen has been built and they are TRYING.
We just keep trying, but just spinning our wheels. And there are people out there who have no one talking for them. I am frustrated today!!!! I toolk pictures of what they called a prime pork roast------it was full was fat and gristle. They looked at it and took it with them.