He only went to nursing home recently, and I know he has to "adjust"... but my heart is breaking. He keeps asking nurses to bring him home. I live too far to visit frequently, and right now this is the best place for him and I cannot move him closer. I will visit him weekends, but I am so worried about him.
Very hard on you. x
Because of where we live, there were (and still are, 18 yrs later) limited facilities and when we had to place my order with Alzheimer's, it was nearly an hour away and the route entailed driving up and down a very steep pass. On admittance day, we were there with him until 930 at night. But they told us, in order for him to "settle in" (that catch-phrase makes me sick!), we should not come back to see him for a minimum of two weeks. We protested that we could not do that and they suggested 10 days instead. Keep in mind that we had given them thorough, written information about his needs and behaviors. My mom couldn't stand it and we went back in a week. Although he was a prolific eater at home and had no trouble maintaining his 219 pounds, he needed guidance and assistance to eat. He got none. By the time we got there, just the week mind you, he had lost 14 pounds and the doctor ordered a meeting to talk about hospice because of "failure to thrive". They said he was refusing to eat, and they "can't force him" because "patients have rights" (2 other catch phrases I have learned to detest!)
We knew he had to be there, at that particular place, as the other places were more than an hour-1/2 away. Initially we agreed to hospice because we assumed (yuck!) that he wasn't going to settle in, that he would continue to refuse food, lose weight and passed away relatively soon. But my mom decided she would go down every other day, period. 80% of the time it was just her, about 15% it was just me and the remainder was the two of us together. Well, guess what? He was hungry, starving. We manually add him, he regained some of the weight he lost and perked up quite a bit. He did continue to lose weight as he ate less and less but he lived on for a year and a half.
Your profile says Columbia Maryland. isn't that a relatively large city? You may have had to locate him where he is "for now" but you will undoubtedly need to begin looking into a place closer to where you live, otherwise, as he progresses, you will find that you run yourself ragged trying to keep up with his care.
I wish so hard that I, and none of us, had to say such things. But we're all in it for patients best good, in this case your husband's and I know you'd rather hear an honest evaluation. Now, this was MY truth, and it isn't everyone's, but you can read it over and over again here. Nursing homes are essential and there's no way to eventually avoid them, but continuing to be the caregiver, albeit not hands on any longer, is just as essential.
Also, if you are his only family, take care of your own health. You can't help him if you are upset and not sleeping and eating well.
it IS'NT to make you feel guilty
in ANY nursing home
when we had to place my FATHER
we manually FED him
______________
By the way, it was one of the CNA's, who took it upon himself to feed my dad on the days we weren't there, who spilled the beans about no one feeding my dad. Although when we placed my dad there, the staff proudly announce that they have weekly meetings and kept everybody up to date with the patient care. But that self-same CNA, when we told him what was wrong with my dad, he said he was really glad to know. WHAT?! How could you not know and properly take care of a patient. He told us the medical condition of the patient was confidential and the information was restricted to the nursing, administrative and social working staff. WHAT?! WE questioned it and were told, yes that's right. The family however can't divulge whatever they want. Needless to say, we made friends with the CNA's and kept them fully informed at all times, knowing they. . weren't being informed as employees of my dad's situation. Bizarre. Nobody gives you a list. You have to be there to observe, to see what goes on, to listen, to hear what goes on, to watch, to understand the mechanism of how that particular nursing home operates. Each one will be different.
Why can't you visit him more often? Keep thinking of alternatives to your situation. Just trying to lessen the inevitable grief-related guilt that will come along after he passes.
Emotionally, send him a tape of your voice along with pictures and other things you both enjoyed. Just hearing about your day, if you have children or pets funny things that happened or other topics that are between the two of you. Of course computer access is optimal but practically I don't know if this is possible. Every month or so send a surprise gift, the nature of the gift could be the same thing you used to do when you were together at home. Something of yours he can relate to such as a coverlet you used when you watched tv together. Don't wash it unless needed, your scent will mean so much. I think the advice from another respondent is also of great value, start doing things by yourself you didn't do necessarily as a couple, maybe a book club, weekend bus trip to someplace you would like, cooking class etc. In other words try to balance your love for him and your love for yourself so you can move forward.
Practically, ask for his medical records on a regular basis, become familiar with his condition and network to find someone who can help you wade through the medical jargon if you are not skilled in the area. Check out Med.gov to see the rating of the facility and learn the heads of each areas such as diets, therapy, head of nursing and head of facility. If you haven't had an opportunity to feel comfortable about the physicians, find out where he trained, is he/she board certified and what other physicians may be seeing him. I so wish I could be more specific, always take his welfare and yours as your main focus. While it is important to be polite to staff, if you don't feel you are getting the kind of information you are entitled to as his wife and most likely by law. Start putting on pressure gradually. Th more you ask for documents and connect, the more they know you are aware. Finally, again it is always about money at times, if you can locate a nurse or other person who could visit and see the environment and then report to you this would be helpful. I believe if they are designated by you and your husband is aware in advance there should be no issue with such an advocate. If there is the home will not hesitate to quickly let you know.
My best hope and wishes go to you
The visits will also serve as a reminder to the NH that people are watching. Be sure they report back to you on how he's doing.
Now my Dad is able to use his scooter to go over and visit but only goes maybe twice a week. My brother who lives in the area tries to take her out for a drive and dinner with Dad once a week at his asst. living place
Two things I've noticed. She seems to have in a way become more comfortable with the place even maybe at times recognizing her room as hers. I don't know if this just the passage of time or because she no longer is waiting for him to arrive everyday. She is usually quite happy and content when we arrive and stays that way until our presence triggers the memory my Dad should be with her. Thankfully we can take her to him. She enjoys going out for meals and seeing my Dad but after she has eaten she usually wants to go home. When I take her back he seems quite content with being left something she wasn't before. A promise that I will return usually placates her. But more often when my Dad goes to her for the visits she gets upset and wants him to get her out of the place. Her going for visits to him seems to work easier when we can manage it. But two hours which includes eating time seems to be about all she wants. She always seems to eat really well most of the time better than when she lived with my Dad and had meals in their retirement dining room. I don't think she could handle the choices.
I agree with what others say it is important to keep a presence in the facility. Try to vary your visits. If possible don't go the same days of the week or times. Or leave and then pop back in during another time of the day. My Mom's place has a lot of visitors coming and going on a daily basis. It's always good to have those extra eyes watching. Maybe you can get to know someone who is able to visit more often and ask them to alert you to any problems they may notice. Just knowing someone else is keeping their eyes on things will help give you peace of mind.
You could also get a "companion" from an agency, which would cost more, but might be more professional.
To find someone, call a church or the local senior center or the local Area Agency on Aging. This could ease your mind, and could become a real pleasure for him. The wife always knows his best stories already!