Our ElderLaw attorney is suggesting that we move to a retirement community while dhis still in good condition. He says that if we wait too long, an independent living situation will more than likely not be available to us because of his condition. I can see how this would be beneficial for my dh, but I just don't want to leave my home. The other thing is that I am 23 years his junior and I don't even qualify yet to be a resident in many of the retirement communities. He said that we could rent our house and I could move back later. Yeah, right, like that would ever happen. Can you all give me some advice, please. I am so conflicted about making a move like that. I'm not ready to give up having our kids and grandchildren come stay with us. I just don't know what to do. TT
Your life is important. I'd suggest that you not move into a place where everyone around you is 20 years or more older than you. So many AD spouses wrap themselves in the cloak of the disease...isolating themselves from others (because your spouse can't deal with people) staying at home (because your spouse cannot travel) ...get the picture? (I KNOW, because that is what I did!) It was as if I, too, had that disease, because I lived the same kind of life. I should have MADE myself stay involved in the world around me. I lost touch with everyone. They moved on. I was left behind. Now that I am alone, I'm having to recreate a life for myself and it's very hard. I vote NO on the retirement community unless you find others around your age are also living there.
I moved into a 55+ community kicking and screaming the whole way. I was still working and loved my home and neighborhood. Husband wanted the move. Best thing that ever happened. When my husband became violent and finally had to be placed my neighbors stood by me. Lots of widows to pal around with. Too many activities to shake a stick at. When my husband died my house was filled with folks and food. I forced myself to join clubs that I didn't think I would really like-and find I do like them. My day starts at 8am with a daily aerobics class and is full as I chose to make it. Most folks are my age and I have two new neighbors who are younger. The community does not offer assisted living. I have my own large house but don't have to worry about lawn and sprinkler care.
Bluedaze* That sounds so good, that I may move down there with you, lol. Nancy has a valid point too, it is, like so many things an individual choice. I like Nancy, wrapped myself in the cloak of the disease and like her never made time for myself. I knew Jim's time was short and wanted to spend every moment with him. I don't regret the choice I made, but it really does make things harder after. Whatever decision you make mothert, take your time deciding. You will know what is right for you. Arms around, S*
I just wrote a big long message, and my Internet crashed. Rather than rewrite the whole thing, I am going to direct you to the blogs I wrote when I made the decision to move to an Independent Living Community BEFORE I needed it. Go to the home page - www.thealzheimerspouse.com- and click on the "previous blog" section on the left side. Click on the 2009 archives. Read the July, August, and September blogs about the move. They are easy to find by skimming through the titles. It is an individual decision, but it was the best for us.
But I understand what she's saying. I don't want to live in a retirement community. I completely understand the advantages, and cheer for those of you who've found it to be an improvement in your situations...but...it's just not for me. Not yet. I wish there were a caregivers-of-all-ages community. Or a community support community. Or something.
mothert--I think we need more information on what type of retirement community you are referring to. Based on where you live, there are different options available. In this area, we don't have alternatives similar to what Joan chose; we have the over 55 communities, but they are all completely independent living and the only advantage I could see to moving there is that the outside chores would be taken care of. We also have continuing care retirement communities (CCRC's), which go from independent living, to ALF to NH on the same campus. However, because we are in our 60's I never considered one of those for exactly the same reason you stated--everyone is 20 years older. Just 10 or so years ago, I was looking at them for my parents! To me, we have already been fast-forwarded into an older-age lifestyle by the disease, moving to a CCRC would be too depressing for me. In addition, most people would need the income from the sale of a home to buy into one of those communities (they don't have rentals available in this area). And finally, renting your current home as the advisor suggested would increase the burden on you as you would take on another job, landlord.
Marilyn - you and I are on exactly the same wavelength. I haven't done any research into this topic because I don't want to do it. Perhaps in a few years. I know that could be difficult to move dh then, but, I still need to LIVE. Yes, he sits in front of the tv all day long. Is that wrong? I don't know. I do think that the tv is a familiar companion for him - it requires no real thinking or decision-making on his part and is very comforting to him. Just because I think it's a "nothing" activity, doesn't mean that he does. I asked him about that the other day and he likes his tv. Now, I'm sure that's more than a bit of rationalizing on my part. I'm sure he would find some of the activities that are offered at these places enjoyable and that would make me happy, as well. But, at what cost to me. If forced to live with this "season" of life, it will become MY season of life and I will get old before my time.
We live in the Pacific Northwest. From the windows of our home I look at snow-covered mountains and the Puget Sound - God's oh-so-glorious creation ; I can't tell you how much this awe-inspiring scene comforts me on a daily basis. The thought of leaving this sanctuary behind brings tears to my eyes.
I will look into the possibilities in our part of the world . There's only one full service community close by that I know of (Merrill Gardens) and I am too young to qualify for living there at this point. I can't believe that hiring caregivers to come in several times/week would cost more than buying into one of these facilities and we aren't even close to that at this point. I totally agree with Joan, though, be proactive. I have put off looking into these things because I find them quite depressing; but, as with everything else, I will force myself to overcome that emotion and do what I have to do. T
mothert - I don't blame you. I have to be where I can see the mountains. I use to think that had to be in the PNW but have found here in the desert I still get close to the same feelings and comfort. I do agree if you are not ready, then don't. It is not very everyone to live in 'senior' community. As far as not being old enough, your hb is and that is all that is necessary. You would have to check to see if when he dies you can still stay. Many will let you since you are already there.
I would think about it, look into it, but if you are happy where you are then stay with it.
We recently moved to continuing care community and I love it! Plenty to do if you so chose, many people my age and many older...wide age range and life styles. My thoughts are this: If something happens to me, my husband will be taken care of. This was was a major concern for me and now that worry is gone. I have respite care when needed, can have help daily if needed, and believe me, just having 5 days respite care has made a big difference in my life.
Good luck on your decision and whatever that might be, I wish you peace and happiness.
mothert--The beauty of nature is also helping me through this ordeal. We live literally in the forest and this summer I had a beautiful pond put in with quite a bit or stonework, a waterfall and fish. While the weather was nice, we sat out there and listened to the waterfall and windchimes and it was so soothing. This time of year I sit in my living room and can enjoy it fom indoors. When my husband was first dx, I considered moving and rejected it. I was losing so much of my former life, I wanted to hang onto the home I love. Over 5 years later, I am glad I made that decision.
If you are concerned about activities for your husband, I found that adult day programs were a good solution for over 4 years. Now I have switched to in-home help and it is a working well. I have a young mindset and I intend to stay that way!
Thank you, Marilyn, for your comments. I just can't think of leaving here, not yet. In my neck of the woods there are no day programs at all - one facility is working on it, but with the economy, well, you know the rest. I really don't know what he would want to do. He has always liked outdoor things that involve more money and brain power than he now has - boating, flying, moving, moving, moving. The last time we moved was to here 11 years ago and I told him before we made the move that it was the last time, that he should prepare to die in this house. Of course it was a bit tongue and cheek at the time, but I am a "nester" and don't want to pick up and try to make another home someplace AGAIN. So, we'll just have to wait this out and see what God has in store for his/our future. I'm not willing to give up the grandkids just yet, either.
Another aspect regarding moving--I was considering downsizing because I thought it would be more practical. Now that I have in-home help, I see that it is good to have the space. They can be in one part of the house and I can be in another and have some privacy. Also, if I ever decide to have live-in help, there is room. If we had moved to a condo, for example, the limited space would not have worked and I would have had fewer options. Here, I even have the space to create a first-floor bedroom and full bath, should the need arise. The cost of that is virtually nothing compared to the cost of a facility.
That's an interesting point too Marilyn. At present I have adult kids in and out pretty constantly, but part of me wants a tiny, lower maintenance place to live. Your point is one that I will add to the list of why this house is ok for now.
My husband isn't very interested in activities, and when we reach the point that he is ready for day care I don't see it working because he likes to sleep late and moves very slowly and I like to get to work very early. So I can see that the big advantage of a retirement community would be activities he could do on his own schedule. But neither of us can imagine moving into the local retirement community--his aunt still lives there (she turns 100 in April).
What we did was move into a somewhat smaller house we already owned (it is about 1700 square feet). It has an attic bedroom for our daughter with a separate (motel style) heating/ac system that stays turned off when she is not home. We set up the walk-out lower level as my husband's space, three rooms including a partial kitchen and a bath with a roll-in shower. He keeps his level at 73 and I keep my level at 68 during the day, 60 at night.
Emily--yes, and here's another thing. I came to realize that if I had moved early on, I would have probably chosen a different place for us as a couple than I might want on my own "after". And I'm not interested in moving twice.
The space thing is really important, I think. I sew a lot, it's my escape. My sewing room isn't large (I remade the den into my sewing room), but it's mine and I spend lots of time in there. It is a way for me to be doing what I love to do and not have to be in the same room with dh watching tv at all times (although that would suit him just fine). If we were to move I'd be wanting the same amount of space, anyway. I can't give up my view or my sewing room - if I had to choose,though, it would probably be the view that I'd part with. I'm going to see how dh does this year (he's mostly very cooperative) and be watching for when I need to add helpers to the mix. Also, in todays economical climate, I'd be having to "give" my house away and I'm so totally unwilling to do that. Our house is paid for so all I have to do is maintain it (that's expensive enough, but at least I don't have a mortgage to pay); so all in all, things are pretty manageable right now. I know our attorney is thinking of down the line for dh and he's probably right, but, I just can't do it right now.
BTW, it is so wonderful to be able to go to this site and have friends in the same boat as I am, who understand what I am going through, and who can answer any question "thoughtfully." Thank you all.
Mothert: I too love to sew and use my embroidery machine, however, my dh gets so unhappy if I am not in the same room that he is in. I keep saying to myself..."next week I am going back to my sewing"..but it never happens.
I put my computer in the living room so that I could be with my DH more. Now when I look over my monitor at him, most of the time he gives me his evil look, why I don't know. He just seems to be angry alot of the time.
I bought a lap top computer about six months ago so I could take it into the living room. My dh gives me the evil eye too sometimes...I think he wants all my attention all the time and resents when I am doing something that doesn't give him my attention.
I use my laptop exclusively. Right now we are on a loveseat in our family room. DH is seated 3 inches away from me; when he asks what I'm going I always say emailing. It's great because we have to watch programs he likes which sometimes bore me; I can entertain myself on the computer.
Marilyn, that is exactly the same thing here. My DH never was interested in the computer. Now and then he asks what I am reading and I tell him headlines in the news..and sometimes there is one that is interesting to him or I tell him I am editing pictures.
Mimi--my husband WAS very interested in computers. For a while he took a break from the accounting profession and sold financial software. So he still has a mild interest, but unfortunately, absolutely no ability to even "play" on the computer now. Sometimes, I will show him a clip from YouTube someone has emailed me if I think he will like it, can't really tell much from his reaction. Occasionally he asks me to close the laptop, and I do. But usually, it allows me to be, literally, 3 inches away from him but connected to the outside world! Thank goodness for technology.
I have to say that I am pretty resistant to being controlled all the time by HIS needs. I, too, have a few needs of my own and sewing and reading and friends are a few. He is very jealous of even conversations with the kids on the phone. For now, I try to ignore his irritation - I cannot pay attention to him 100 % of the time and I DON'T WANT TO! Probably, I will have to surrender in due time, but for now, no way!
About the tv. mothert, I really would not feel guilty about letting him watch it. My dh has gone through stages of watching for hours, then not at all, and during the "watching" periods I am very happy to just let him sit there and watch. The alternative is sitting at the kitchen table cracking nuts, staring at a magazine and repeatedly turning the same pages, or just doing nothing. It's not as if he were a child who needs activity to learn and develop: I just want him to pass the time in a way that is most pleasant for him. I bought dvd boxes with old series of his favorite sitcom. He will watch about two of those at bedtime.
mothert--I found that the phone jealousy went away in time (we must be further along in the disease process). In the beginning it was most annoying; now, when someone calls I can go into another room and have a long, uninterrupted conversation. I think that will come in time for you when your husband is generally less in touch with things. As far as being controlled by his needs--yes, that is a really diffcult adjustment. I have tried to find a balance between some time for me vs. always surrendering to my husband's needs; but, as long as he is living at home, I have accepted the fact that most of my time will be centered around him. Sad to say, the only way I know of to get around that is a long day at daycare most days; bringing in lots of help; or placement. Even with 4 hrs of respite most days, by the time I go to exercise class, see my Dad, take care of errands and appointments, there's really not a lot of relaxation time left. However, I recognize I'm fortunate to have the breaks to accomplish what I must do.
Thank you, Marilyn, for your insight. Yesterday was a bit of a "melt down" day for me. I was always the "go-to" kid growing up and I just wanted someone to care for me for a change. I never had children because I didn't want the responsibility of taking care of them, stuffing my needs for theirs, etc.(selfish, I guess). But, now, God has played a most unwanted and cruel trick on me - I've become a mother with no hope of watching my charge grow up and become a healthy, productive, loving human being - no future to look forward to at all. However, starting today, I will focus once again on what I have, not what has been taken from me. If I can only remember that when I start into my "pitty parties" I recover quickly. My dh is a very good man who took such wonderful care of me all our life together. I am ashamed of resenting all the care he needs from me now.
We all have meltdowns, we are human. I was 56 when my husband was dx; I had retired at 50 to take care of my parents. I resented my role as caregiver to my husband as well in the beginning, but came to accept it. And yes, I feel that I have become a mother as well; but I will miss him and probably the "mothering" when he is gone.
Even though we choose to stay in our homes, I think it's good to at least check out what is available in our local areas. If our current living situation is working fine----and there's potential to adapt in the future (day care and / or in home care aides etc), then we tend to wait until a crisis occurs before doing any research into alternative living options. If all is currently well, then that may be the best time to do some reading and phoning and inquiring for future reference. Maybe we will never need the information but at least we're better prepared should things develop to the point that a move is needed.
We made the move from a large home in a peaceful, wooded area with wildlife that DH loved to feed..to a continuing care community set in a lovely wooded (less wooded!) area. I agonized over it before the move but I'm so glad we did. Looking out our patio door I see trees, azaleas, a gazebo, bird feeders and in the spring there are beautiful flowers and I'll add my own to "our" area. DH has talked more since moving here. We do a lot of walking and his walking has improved and he actually "greets" people he meets now. Prior to the move he was not talking much. Maybe seeing more people has helped? I go to exercise three times a week and he either sits quietly or sits and waves his arms and moves his legs. There is a 30 minute "walk it out" session once a week and we join that although he is not walking quite fast enough to keep up, he does seem to enjoy. I'm glad we're here. The security of knowing that he will be well taken care of is great. Do I miss our home of 37 years? Yes, but life is about change and I'm satisfied that this is a good change. (Helps that the food is good also, even though I still do some cooking!)
Glad to hear you're settling in Jackie. We've made a similar move and although I miss our old home, I know this is the best. Right now I have DH in respite care here for a week and I'm getting some much needed rest. Already planning to use respite again. DH has declined as far as his eyesight is concerned but as you said about your DH, we're doing more walking and he is interacting with people a little more...stress on "little" since he isn't talking much. This move has helped calm my greatest fear of "what will he do if I'm sick/injured?" Good posibility we'd share a room in the health center until I would be able to resume care for him. Of course that would depend on the reason or need I had. I do feel much safer.