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 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.

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.

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

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?

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.

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

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.

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.

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!

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.