I'm trying to plan for the future--my husband is 65, Stage 6. Today I got out his LTC policy and saw that they will pay for 15 days/year of respite. Right now he's living at home with me, doing daycare 2 days a week and we have an aide for 4 hours a day the other days. He is still very social, our social life is pretty much as before--today we're going to the symphony and dinner out. Although he was dx at 60, he appears to have the late-onset version of AD, meaning the progression is very slow.
My last overnight respite was for several days 4 years ago. His sister has said she'll come in for a few days next month so that I can get a break--there's no one else to leave him with. What I'm wondering is--at what point in the progression is it appropriate to use a facility for short-term respite? For now, it's out of the question--although he needs assistance with the ADL's, his health is perfect otherwise and I know that he would be very unhappy staying somewhere, even for a short time. After 3 1/2 years of daycare, he still says "Thank G-d you're here" in a very dramatic way each and every time I pick him up! I have asked him if he was worried I wouldn't come back, and he responded "no". I just think he still views himself as normal, and in some ways, he is. There is still much of his "pre-AD" personality and comprehension remaining--his deficits are caused by agnosia and apraxia.
Those of you who have placed your LO's for a short-term respite, how did you know it was time?
Marilyn, I've been very vocal here about my respite, the need for it, and begging those whose spice are in stage 7 to use it. It is when you have to bathe them, dress them, feed them, have to have someone with them 24/7 that true respite is ESSENTIAL.
That said, everyone needs at least a half a day or two half days away from home....in order to see friends, shop, relax and be away from AD for a while. It rejuvenates you and helps you be a better caregiver.
There are threads on this, but I don't remember their titles....sorry!
If your husband's sister is willing to come and stay with him so you can get some respite, take her up on the offer! It is a good solution because he will not have to go anywhere and get used to a different routine or different people. He'll be in his own home with someone he knows.
Marily - My husband has been in assisted living for 3 months now. He is late stage 6 and 66 years old. His progression has been exceptionally fast this past year. I know everyone is different but hindsight is always foresight . . . I would of used more respite earlier. I didn't know how it was impacting me until I would cry at the drop of a hat, I got sick and never seemed to get well, and was totally exhausted. My husband would same the same things that you are indicating your husband says. In addition, my husband used to think I took him there to have him killed. At this point, you may want to consider what you need. If you aren't healthy, you will not be able to take care of him.
In my case, I used respite for the first time a couple of months ago not because my husband's condition had worsened so much, but because mine had. After nearly seven years of caregiving and the never-ending responsibilities, I was ready to drop. My own health had declined drastically, and my emotional health had slid along with it. I kept thinking that respite was for when DH was farther along—then one day I realized that respite was supposed to be for ME, not for him.
When you reach the point I did, you realize that you have to be the one to make the decision. Yes, they are probably not going to be happy with it. But ultimately, I think getting a break now and then will help me to be a caregiver for longer than I would be able to without the breaks. Please don't feel guilty if you feel like you need some time to rest and regroup. (One of my favorite quotes is "Even a steel ship needs maintenance". And we're certainly not steel ships!)
In addition, I realized that by having short respite stays now, the nursing home will not be completely unfamiliar to DH when the time comes for permanent placement. Also, the staff will get to know DH while he is not as impaired as he will be in the future. I like the idea of some of the people getting to know the parts of him that are still there now.
I am planning more respite for as soon as the nursing home has a bed available. I am going to go see relatives that I haven't been able to visit in five years. I realized that if I put off everything, like visiting aging relatives, until "after", that they might not still be around to visit with then. I don't think I could forgive myself for that.
Please don't wait until you are ready to drop before you have respite. Remember that all of those of us who are caregivers are deserving of care and attention as much as the loved ones we are caring for.
I am so completely thankful that my daughters are willing to come spend a weekend once a month. However, this actually equates to one full day (Saturday) of respite. I didn't even know what that word meant at the beginning of this journey 10 years ago. But as weeks pass and the issues of each day are tackled, I'm really beyond tired when relief comes. So I read these topics with intense interest. I'm afraid that DH won't 'stay well' anywhere with non family members. But we are going to have to try to do something before much longer. I wish we could get a day program going. It would be the answer..unfortunately the day program closest to us is full. At any rate, out of near desperation, I'm willing to try a respite week. Have no idea what to expect My dream would be that he could be picked up and happy like a kid coming home from camp. Until we try, we aren't going to know.
Thanks to all who responded--you gave good advice. Mary, it was actually your posts about the benefits of respite that got me thinking about it.
My situation is a little unique--while Steve's onset was young, the disease is progressing rather slowly, thus his doctor says he has the "late onset" version of AD at a young age. Five years post-dx he is still sharp in some ways. But I realize, he could be one of those that survive for 15-20 yrs with the disease since he is in great shape otherwise. The reason I am thinking about this now is that I DON'T want to get to the point where I am exhausted and struggling before I actually bite the bullet and do it. My SIL comes in once a year for about 3-4 days; while that's nice and a good place to start to take time away from my DH, I am more focused on when to start using the 15 days the LTC policy covers. Since it's not tied into hospice, I don't have to wait until Stage 7. BUT, it may not be practical to do it before that stage.
DianeT--I had read your posts on this subject before I started this thread, seeing that our husbands are close in age A problem I recognize is that we have to deal with the socialogical impact of AD at a young age--i.e., daycares and ALF's are not really set up for younger people. For example, the staff at both uniformly speak very loudly to their residents--they are in the habit because most are a little hard of hearing. Well, Steve hates that, his hearing is 110 percent, and it overstimulates his brain. I've even heard him say to a staff member at daycare "You don't have to yell at me." This is just one example that would complicate using respite services. Can you imagine living somewhere for a week or two where everyone was yelling at you? Not pleasant!
I totally understand why you advised using respite sooner rather than later and I saw that your husband was placed relatively quickly. My concern is--if I do it too soon, he will be totally miserable. He will be well aware that he's in a place with all "old" people, like the ALF where we go to visit my Dad. As a matter of fact, if I wasn't want to hide his deficits from my Dad, I could consider letting him stay in the same ALF for respite!
I guess part of my hesitation is that I don't want to rock the boat in terms of my DH's mood--after anger and irritability of the early stage, he is back to his old sweet personality now. I don't want to do anything that would change it and bring the anger back. It's quite a balancing act between his needs and mine.
I just thought of the metaphor of a long-distance runner. That's how I see my caregiving years--I'm trying to plan wisely so I can finish the race, not burn out before the end.
Even with my husband in a facility, I find that I use one or two vacation days each month just to give me time to breathe, get some errands done that need doing and maybe even take a wee bit of time to do something with a friend. When he was home, I was taking the time, but with him there, I really wasn't getting the break that I needed.
You need to make a habit of whatever your future plans will be and start to make it happen. That way as they progress, it is part of the routine.
Take the advice and don't let yourself get so worn out that you can't think to take the respite that you will so desparately need.
I find that for now, with dh in stage 5, three days of daycare (and they are long days, the van picks him up at 9:30 and brings him home about 4:45) are all I need. Getting overnight care seems too drastic for the moment. Although I must admit that my long weekend: he is at home Sat, Sun and Monday sometimes seems VERY long. And I did talk to my case manager today about emergency care in case anything happens to me and I just loved her answer: just make sure everybody knows my phone number and CALL ME. She would be able to arrange emergency care. Also I have been looking at nh's and talking about them with her: she has definite views on which ones are better -- just to be prepared. I hope it's many years off.
After writing the post above in March, I took DH along to PA in May to see our son, DIL and grandchildren there. Also visited by brother and SIL for a couple days. On the whole it went OK, it was good to see everyone, I had a good time, but it was very stressful for him and for me, especially at airports. (DH refused to take off his shoes to go through security at Newark, had trouble using the bathrooms, etc.) Now that bathroom issues are even more difficult (he's in Depends, has occasional accidents and I couldn't possibly get him changed on a plane) I've decided that -- barring emergencies -- there will be no more air travel for him. Perhaps the deciding factor was my 7-year old granddaughter asking her Mom whether Oma could maybe come alone to visit sometime. I hadn't realized until that point how much my attention was monopolized by caring for DH. Also my son commented that DH himself hardly seemed to know where he was, was not interacting with them and on the whole was not seeming to enjoy the visit or get anything out of it -- just enduring.
SO I've decided to have him stay in short term care in October while I visit my Mom and attend my 50th class reuinion. It is the same place where he goes to day care, although he will be in a different area, I think, with different caregivers, I hope that the ones he knows will drop in on him. It's all set up, flight booked. I'm looking forward to it already; it seems such a luxury to be able to travel alone! For those of you who have done this -- any tips on how to handle it, what to pack? My contact at the facility urged me to bring him the day before I had to travel, and not to pick him up on the day I get back, but the next day. He even recommended waiting another day after that, but I don't think I could.
marilyninMD, I know you will not want to hear what I am going to post, but I used respite in a hospice facility when he was stage 6, however much further along than you describe your husband to be at this time, it was the worst mistake I ever made with this disease. He was still too with it and gave the foks a big problem. I have now used the same facility 3 more times while in the stage 7 and it went very well. The awarness is the biggie.
I also see your point of trying to make yourself be able to last. Mine is as you say yours is, diagnosed at age 60 but healthy and I would say will be one of those 15-20 year progression, that is my take on it. So it is like a big balancing act, you never know what is right until you try.
Sorry, I know that is not what you needed to hear but you did ask.
Jeanette--When I read your last post I thought of this--I have checked out using respite in a similar setting to what you have described--located where DH attends daycare. What I like about it is that during the day, he could still attend the adult day program, so at least that would be familiar to him. The rest of the time, he would be staying in the ALF on the same campus. The director of the day program says that they have families who do this regularly with members when the family goes on vacation. The downside, of course, is that one would have to pay for both the respite stay and the daycare.
However, for now, I plan on doing what I did in April. His sister came in from Texas and stayed in our home with him while I went away. I continued to have our aide come for 4 hours each day as well. The only real problem encountered was when his sister tried to take him to his adult day program, he refused to get out of the car and she had to bring him home (she got lost going over there and had to stop for directions, that may have freaked him out). So we will do it again, but this time I'll have only the aide each day and forego daycare until I return.
Jane--was your husband actually qualified for hospice care while in stage 6? Yes, the awareness is what I am concerned about in terms of using an ALF for respite, as well as the age factor. Dementia programs (adult day, residential facilities) just aren't set up to accommodate younger customers. I realize that later on in the disease, this probably will not matter as much, but now it still does.
marilyninMD I was just sitting down to post about the hospice at stage 6, I had not even read your note and realized that I must explain this. My husband lost his speech very early in this progression. He was what I would have deemed late stage 6 when I used the respite facility with Hospice. The reason he qualified for Hospice was the speech and that is the only reason. They are considered stage 7 when they can no longer say more than 6 words.
My husband was still aware of more than we realized at that time but still not nearly as aware as yours. He had long since stopped being able to be taken anywhere. He would hold on to the door facing if you tried to take him even outside, it was during this time that was so difficult for us. He would not allow the use of a wheel chair, would not get into the car etc. Not until I got the power wheel chair could I even transport him places. For some reason the power chair must not have seemed like a wheel chair to him. With the manual chair when our daughter would take him he would hold on to the wheels to make it stop and drag his feet. With the power chair and the wheel chair van that all stopped.
MarilyninMD, you need to remember that the saying when you have seen one Alzheimer patient you have seen one is very true. No matter what experience anyone here has had with the respite yours will be unique. You need to try and see how it goes you will never know until you do. What is the worse thing that can happen? a bad experience and just maybe a wonderful one for you.
From my experience you need to do everything you can to keep your sanity, your life and your health and if that will help you last and keep him home then I most certainly would give it a try. You count too.
When I placed my husband into a ALF for respite he got very agitated, had high high blood pressure, felt I had abandoned him. They had to get him drugged. Now after 3 weeks he is still not adusted. I would say, try it out before you leave in October. Perhaps just for a weekend to see how he responds to being away.
In May I put my wife in hospice respite while I went to Chicago for 4 days. The local hospice does not have their own home, so put her in the local hospital. She did very well, everyone liked her, and she was happy to come home when I got back. I did not notice any change in her condition. As Jane said, every AD patient reacts differently, so give it a try. For me it was well worth it.
I like the idea of trying for a couple days at a time if you can beforehand.
That said, you have to do what you need for yourself. You already know what the facility is like, so that should give you peace in that he would be well cared for. As for his reaction: as others have said, this is one of the difficult decisions you make for your needs, not his. You will be doing the best you can to make sure he is safe and well cared for. If he has a downturn, you will deal with it when you get back. You have time to psych yourself up that he will be fine and most important you will enjoy your visit and reunion. You have family in the area and if there is a problem, maybe they can make themselves available to be there for you if need be.
Jane--I haven't had my coffee yet, maybe that's why I'm a little dense today! I read your post that the lack of speech was what qualified your husband for hospice. Did you mean that was the "icing on the cake" so to speak? In other words, he was having difficulty walking, needing assistance, and combined with the speech problem that's why he qualified?
marilyninMD Yes, the loss of communication no more than 6 words was what put him into stage 7, that combined with all the stage 6. Once speech is down to 6 words they are considered in stage 7 and stage 7 qualifies them for Hospice. You have to remember all the things in stage 6 were also going on with him.