My husband has dementia and is in a nursing home, which is quite far from where I live. Any suggestions on how to handle?

This policy of staying away for two weeks, I'm sorry to say, is not a good blanket policy. If we'd have done that for my mom when she was in rehab, she would've died. It was a very expensive place with staff drastically cut down to benefit the board of directors. Some people may be able to cope with this but not others. I believe in gradual withdrawal, but this is too much.

cprjmr - If you can't get there to see him, you may want an "agent". This could be someone from a church or a stay-at-home mom or a retired person who could go by once a week. I would offer $10 to $25 a visit.

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!

It may be harder on you than it is on your Dad depending on where he is on the dementia scale. My mom no longer handles a phone call well, its too confusing for her not to see the face and she usually hangs up or gives the phone back to whoever called if we try. I thought it was going to be very hard on her when my Dad could not visit her for several weeks but she never seemed to notice it had been a long time.

Kathleen - my opinion is too rude to print. My heart sinks for you. Hope you're able to get back on the road very soon. x

What are your reader opinions of not being able to let dad speak with me for 5 mins. after all these days I am sick & shut in? Besides getting another family member that feels uncomfortable bring a cell phone there what other options might I have? I was thinking of getting him a pre-paid for a short while until I find other placement but I would still have to rely on someone to dial for him & show him how to use it since he is bed-bound (well hoyer-lift) it wouldn't always be handy. depending on staff to help him use it would sort of make it a moot point wouldn't it?

I have been shut in (as the only visitor/caregiver) for 7 days now. I used to visit dad everyday. I am sure he is frightened & confused that I cannot get there but DFW has had an ice mess for like 5 days. Highways closed, 200,000 without power, not safe to drive at all & for a few days before icemageddon they call it jokingly I had pneumonia so the only thing I really wish were possible was phone calls. They don't allow phones in the rooms at this NH & the nurses/cnas are not allowed to use their building cell phones to answer except in emergencies like keeping them open for calls back from md's and such so when after not seeing him for 3 days I call the fac. ask for the right nurse & beg them to find a way I could speak with dad, or have someone that doesn't mind using their phone to go down to his room & call me back but no I have to actually find a family member that usually doesn't go or doesn't want to drive in this to go over there to him so I can actually talk to him on the phone. Have you ever heard of anything more ridiculous? This is a nice home too. In fact you can only speak to his nurse on duty if they happen to be seated at the station, if they are down the hall & have their phone (because of that ridiculous rule) you can't speak to the nurse for hours to get a message to them about his care or get an update on him. I think it is an extreme rule that maybe needs some exceptions. It does upset me not to be able to speak with him for that many days. With his dementia I am sure he is frightened. I think it is cruel not to make an exception with all these bad driving conditions & a worried family member.

My Mom had to move into a dementia center last Spring when my Dad was no longer able to cope with her. She was close to his place and he visited twice a day in the beginning. His own health was declining so those visits became once a day and then in Sept he was no longer able to visit her at all. I do have one brother in the area but he was dealing with Dad's failing health and working. The rest of us kids came when we could which is only every couple of weeks. We did take my Mom to visit Dad who was at the time the less mobile of the two but she went a good two weeks without seeing him and we learned Mom got along just fine without the constant visits in fact she may be more content without his constant visiting. I think sometimes when she sees him it reminds her of a time when she was somewhere and someone else. It seems to be less of a problem when we kids visit.
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.

Try to find friends to visit him when you can't go. Maybe your friends or church members can drive his friends over. Unless his mind is totally gone, he'll need to know that he has not been sent away and that his friends and family still love him.

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.

I sympathize but I'd be ecstatic to have my dad in a nursing home far away. I could then have my life back.

has any heard about the g8 meeting on alzheimers keep your eyes and ears open xx

I have been in same situation I contacted his consultant that was dealing with my husband and asked him to be transferred which happened after a lot of complaining , you must stand up for him and you try everyone going xx good luck

I am in a similar position, there was no choice but to place my mother over 1000 miles from where I live and work. Yes there are places closer but there are reasons why she had to be where she is so although many have advocated a closer move I understand there are circumstances where this is just not possible. Here are my thoughts from an emotional point and practical point.

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

Ummm, just wondering why you moved him so far away from you.??
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.

I am sorry you are going through a difficult time. My husband is in a care center but we were fortunate to have a choice of several places. We chose one 3 miles from our home so I could go there every day. He has weak legs and loss of balance so he uses a wheelchair at the facility. I am able to get him in and out of the car so I bring him home every afternoon which helps him cope. My niece's husband is in a care center quite far from their home. She moved in with her daughter who lives closer to the facility. She does not drive so now it's easier for her to visit her husband. Also, my husband calls me every evening. Sometimes the aids have to dial for him as he gets the numbers wrong. Talking to me helps the evening go faster and soon it's bedtime. Is there another gentleman there your husband could be friends with? I wish my husband could be home with me but I couldn't be a caregiver 24/7 any longer. Now I have some time to recharge for each day. Good luck and God bless you.

Although I can say, "Stop worrying", you will anyway because this is your husband and you love him. BUT, know the nursing home is the best place for him as I am assuming you could not handle him any longer at home. He has a terminal illness. Start thinking about what you will do and how you will manage without him. This time away from each other will allow you to see what it is going to be like, and there will be an end to his disease. When you visit, know he is being cared for by professionals and this is best for him. When you are back at home after visiting, pray for him, and know you did the "right" thing for him. This is about his care now and ending his life with dignity and grace. My blessings to you both.

Advocate, advocate, advocate for your loved ones and yourself. Educate yourself. It's all here on the internet, just a few clicks away. Ask lots of questions here, someone usually has an answer or an opinion. learn as much as possible about your loved ones diseases and the treatment options AND when it's time to stop. I find it totally ridiculous that CNAs are not totally included in the team. How can they report troubling signs and symptoms if they don't know what to look for? 50 years ago in the UK as student nurses we were always included in the full report and had access to the patient's record. of course that was long before confidentially became such an issue but that was then and this is now. Interestingly hospice or at least the one I worked for still functions the same way I still feel that CNAs do not receive the respect or education they need to be effective

Sorry - too many voice activation errors, I must do corrections to make my post understandable.

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.

Move your home closer to his home so you can visit frequently until he no longer needs you.

I understand your feeling and your husband's sense of loss. It appears he has some understanding as he misses his home and knows he not there. I don't think there is any substitute for your being able to visit him frequently for him to find peace. Also, patients tend to get better treatment if family is visible so you need to find someone to take you back and forth to the nursing home.
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.

This is a very sad situation. Please don't misunderstand me: in telling you what I'm about to say, it is it to make you feel guilty, but it IS to let you know that, IMO, in ANT nursing home, you or someone other than staff is going to have to oversee, read that: supervise, your husband's care.

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.

That's what I'm wondering, too - how does he come to have been moved too far away for you to visit? And how far is too far? If it's a matter of needing transport, are there any volunteer networks in your area who could help get you there more often?

Very hard on you. x

Why is he in a nursing home far away?

My heart is breaking for you! This is so sad. Can he talk on the phone? If so, could you call at regular times? Is there anyone else who could also visit him, during the week?