As I have mentioned before, about 2 years ago my wife and I moved into an Independent Living apartment in a retirement home. At first we were in the largest, and most expensive, apartment. This past January we moved to a slightly smaller, 2 bedroom, apartment that is more than adequate for the 2 of us, and costs $1,300 per month less than the first one. We still have our family home on the coast of Maine and will try to keep it for the kids (if the stock market recovers).
What are the advantages: 1. The evening meal is provided, so I don't have to cook it. I do have to get breakfast and lunch, but they are easy. 2. There are people for me to talk to during dinner, or during morning coffee or happy hour. 3. My wife gets some stimulation from seeing other people, although she probably gets more from the Adult Day Care. 4. All maintanence is taken care of. One Sunday afternoon the battery alarm in the smoke detector in our bedroom started sounding. I did not want to have that all night, so call maintenance. Someone came within 1/2 hour and changed the batteries in all the smoke detectors. 5. There are lots of activities for both of us. Last Dec. the nurse from Assisted Living called my wife to come down and help decorate the tree. A week later they asked her to help decorate Christmas cookies. Once a month a group of 8-10, mostly couples, go to a local restaurant for lunch. There are several different activities every day.
What are the disadvantages: 1. Really not many other than the added cost since we did not give up our other home. We are only 20 minutes from it, so can get there as often as we want.
I would say "go for it". A 2 bedroom apartment should be big enough. We use one bedroom for sleeping. The other is the "den", where the computer is. It also has a futon, so we can have overnight quests.
Joan, my parents faced the same dilema several years ago. Should they sell the cherished family home and move into a retirement facility or just get along the best they could. My father had several health issues that mom and I dealt with and saw him through. Then, Mom got shingles that were relentless. After a lot of thought and talk, they decided to go ahead with a plan to move to The Chesapeake, a very nice retirement community in Newport News, VA. It WAS A VERY DIFFICULT decision. My mom misses her beautiful manicured grounds that she maintained herself. Dad misses his own workshop with his woodstove and works-in-progress surrounding him. Misses the neighborhood cats that kept him company there. Misses his fish pond. But, I can tell you, as traumatic as the move was for them, they are VERY happy they decided to do this. At first they moved into a "cottage"...a little home on the perimeter of the "compound" as I call it. Then, into a smaller one (they hadn't even finished unpacking at that point). Then, into the main building in an apartment....now, a smaller apartment with a beautiful private courtyard out back. (Great benefit that was unexpected....for me....was that I got to have all the furniture, rugs and "stuff" that was precious to me and wouldn't fit into their new abode!). There are all kinds of activities. They have to check in with health care services every morning by a certain time or someone comes to knock on the door. There's a wine-tasting club, a dance club, a supper club (individuals host dinners at their apartments weekly), church services of variious sorts, you name it.....shops, gardens for the residents to take care of, gym and spa, a woodworking shop for my dad. If one or the other becomes incapacitated to the point where he/she needs more care, they can move to another wing....and on to the "memory unit" in case of dementia. It's wonderful. I'm not at that point yet, neither do I think John and I could afford it if that's the choice I could make. (John's much older than I am...80 to my 54) so, I want to hold on here as long as I can. I think if you're considering it, it could be a very good thing. Just look around at all your options. Mom and dad are lucky to have a facility like that so near to where they lived originally. MANY of the friends they've shared all their lives live there, too! So, check out that aspect of it, too.They love it!
I think your thinking is very sound. I wish many times that I had made that move several years ago but now I am afraid we are too close to the NH for Carol. We live in a small house, reverse mortgage. gated community, small house and lots of nice neighbors butr they arn't the kind of relationships you need for Sid. That is so important for you and Sid both. I am getting so tired. Hope I can find time to put some of my experience about this horrible desease and my personal F aith. I will be praying for you. Promise. bill
I agree with the others. If you find a retirement community like Marsh's, Sid can move into different care levels as he needs, and you will still be close. Just be sure to find out if they take Medicaid if you don't have Long Term Care Insurance.
I know what you mean about having people to visit and chat with. That is why we miss the last part we worked in down in Nevada. We were the 'kids' in the park but we have always hung out with seniors, even in our 40s. We seemed to have more in common and more fun with them. We miss going for our walks every night and chatting with whomever was outside or also walking. They felt like an extended family. Yes, there was problems in the park - a co-op is like a small city - but we still enjoyed it.
I also realize you are upside down on your mortgage. We bought a manufactured home in 1996 when even they were going up in value. When we had to move in 2004 we owed 40,000 more than it was worth. We let the bank have it back and filed bankruptcy cause the bank would not work with us. It is a hard call, but you have to do what you have to do.
And then it is visiting facilities to try and find one you feel you will fit in there. You may even be lucky to get an apartment that has lots of big windows that lets lots of light in.
We also live in Florida and had downsized to a much smaller home, got rid of our big heavy furniture that didn't fit. We live in a neighborhood in an older part of town. Most of the things we do are within walking distance. We have enjoyed living more simply and it is cheaper. BUT......since his AD, I have to look at - it is still a HOUSE with a yard, etc. I have considered and checked out the various "independent" living arrangements here in the area - we have several in our area of town that are very nice. I like the idea and may do it one day. Right now, the market is the problem in selling this house. Along with AD came a big unexpected drop in our finances. I have planned to move into one if my LO dies before I do. I am all for making life easier and more simple.
I think you have already been making significant life changes, now it's just a matter of location. While you will always be Sid's wife, your primary role is, and will increase, as a caregiver. You are also moving more and more into a very intense business mode--and that's different from teaching. You have major new responsibilities and even people working for you. You're on a roll. Your business obligations are going to increase, it's your manner, you can't help it. Often times we have a dream, a sunny house in FL, but when we get that dream, our lives have changed, it doesn't always fit in the way we thought it would. If the only thing holding you back from this move is the physical house, then give it a lot of thought. You can always soak up the FL sun on a lounge chair in a retirement community. How much more freedom will you have to do the things that are taking up your time and that you seem to thrive on if you do not have to maintain your own four walls? The finances? Well, only you know, and the real estate mkt may not be what sellers are looking for now, everything's a trade-off but one thing is carved in stone--AD will have its way, your caregiving will increase, you will need more and more assistance. The time may well come when you think you will want to move back into a small house again, but for now, if you really think this is the best thing for you & Sid, do it sooner than later, it will get harder to make the move as time goes on.
Yes, I have spoken with Sid about it. He admits getting nervous and overwhelmed with all the financial decisions and such a big move. He does seem to think that it's certainly something to look into.
Betty,
You are absolutely right - as the caregiving increases, my ability to take care of the house will decrease. I will explore all options.
Joan, a little over a year ago, when Dave had only been diagnosed with eoad for several months, and while he was still able to help in the decison making process, we sold our family home (much to chagrin of kids and grandkids) and moved into a 55+ gated condo community. It's not assisted living, but it has some wonderful benefits. As I still work, Dave has the freedom to swim, golf, play pool, and socialize with men his own age. This has been a life saver to me. I know that he is stimulated intelectually (there are some rather animated politcal topics in the jacuzzi every afternoon), and as of yet, still able to stay active if he chooses. Mind you, sometimes he chooses not to, but oh well. I. too, think this is a no brainer. Best of luck in whatever you choose.
I'm 54 and can't bear the thought of moving to a retirement community (and our kids are 16 and 19 though both away at school). My husband also has never been very social and he refuses to get involved in any activities in our area. So we are moving to a smaller house, which we happened to already own. It is currently being renovated (pictures on Facebook). My husband is having a hard time getting rid of anything, but I'm glad this is forcing him to reduce his stuff somewhat. I'm eager now to simplify my life, not have so many things. What I'm accomplishing in this move is separating my space from his (he will have three rooms with a partial kitchen, his own bathroom, and a separate entrance). And the stuff he leaves all over the house won't be in my part of the house.
Joan, it sounds like this is what Sid needs. But also it would be of so much benefit for you. All the problems of keeping up with working, a house, expenses will in time be more than you need to handle with the caregiving for Sid. Giving up your home and moving will be hard, but the rewards should compensate.
I live in Colorado in the mountains where I grew up and love my home. I drive 22 miles to see Ralph in his care home. Believe me the thought of simplifying and moving myself to a retirement community closer to him has been on my mind a lot lately. There are many advantages and I would not be so lonely. My family lives 1000+ miles from me, so it is all up to me. I do relate how you feel about your home, as it was our dream to retire to the mountains. But without Ralph, the dream is bitter-sweet. You are fortunate to have a choice of retirement homes, so take the time to research the homes. Keep us updated. Very timely subject for me especially. Good luck with your decission.
I agree Joan, decision making becomes much simpler once we have to think of the future concerns that new stages of AD will bring. you would thrive in a new community now still as a couple but as Sid becomes less able to tolerate the social life you will be able to continue and he can move into a new living arrangement on the property when that time comes. beging able to make the move while he is relatively still high functioning is a good choice. if you wait and become overwhelmed later with all that entails homeownership its going to much more difficult. AD seems to want a simple comfort zone of known surroundings. changes later on can bring on difficult behavoural issues too. i hope if you are considering you can work it out to get it done soon. Divvi
Joan--Would the type of place you are considering be called a continuing care retirement community? I'm familiar with that concept because we looked into that for my parents several years back. Which leads me to something no one has brought up yet. Here in Maryland, the residents of CCRC's are older than you and Sid. Would that be an issue? While it is probably the most practical solution on many levels, would the fact that everyone else is significantly older be a problem? (Unless it is different in Florida.) I would think that in an active over 55 community, you and Sid would find more of your peers; however, for the long term, I can see how the assisted living would address more issues.
I believe I alluded to this earlier...but the main problem I had when I looked into a number of facililities was that all of the women were in their late 70's and older. I was in my 60's and could see myself becoming their caregivers as well as my husbands, because that is my nature. I would look around and ask myself, "Who'd be my buddy that I could slip out and go shopping with". Didn't see anyone there who could begin to be that person.
Some of the more expensive,high end facilities DO have younger (late 60's) women, who are there with their husbands, but I cannot / will not invest $450,000 in a unit and then pay monthly fees of several thousand a month. I know that they will refund 80-90% when we die or move out...but that is only when they resell it. Just too iffy for me.
There is independent living and there is independent living. The single family home in a landed condominium that I live in is considered independent living in Pennsylvania. It would not be an improvement for you.
My next door neighbor moved into an apartment in an assisted living community. 3 meals a day and they do all maintenance on her 2 bedroom apartment. It has a kitchenette because frankly she will never make more than a cup of tea there, and probably not that because there is a place on the first floor where she can get all the tea she wants and company as well. It isn't as independent as what you are considering, but it isn't a nursing home either. Her community can slowly move her into more and more services as she needs them, and as the price goes up, she can move into smaller apartments.
The problem with that particular community, for me, is that it might work out for my husband, but I don't belong there. I'd go bonkers with boredom. And frankly I could not afford it either.
If you have found a place somewhere between these two extremes, then you should consider it. But do take a good look at it not just for Sid's needs, but for your own. Both Marilyn and Nancy have made some excellent points.
Joan, considering Starling, Marilyn and Nancy's comments I know I would not be helping myself by moving in with elderly people and I am 71. You are much younger and like they said you need to consider yourself foremost because of Sid's dementia. Tough decisions to have to make on top of everything else.
Here in Florida, we have it all. I would be looking at Independent, NOT Assisted living. And yes, I feel I am too young, active, and busy working even for Independent living, but I need to think ahead. I don't need the socialization and activities. I have many friends and lots of work. But Sid needs it desperately.
I cannot afford anything at this point. If I sell the house, I will net ZERO, because the mortgage is upside down. The bank will just have to take the selling price and be satisfied with it. Without a mortgage, taxes, homeowner's fees, home maintenance costs, and big grocery bills, I may be able to afford a place that charges monthly rent, which includes amenities such as activities, pool, gym, cleaning, and one or two meals a day.
NO - this is not what I want at my age, but it's only going to get more and more difficult for me to care for Sid- As I said in the blog - I anticipate caring for him, the house, and the business will just be too much for me. So I am going to do a lot of investigating.
Joang, Just to offer this word to you, if you have seen one Alzheimer patient you have seen one, so the saying goes. And what I am going to say will not necessarily be true in your case.
I considered a change early in the disease process, I did not do so and now have a great big landscape to maintain, however, having said that, I also will have to tell you that what I would have picked at that time would not have been right for us at this stage.
It seems that once I get something that works for us by the time I have done so my husbands needs and abilities have changed, nothing works for long.
If Sid progresses the way most Alzheimer patients do, then you need to choose where you will want to be for the longest period of time rather than base it all around Sid. His needs will change, within no time you will not be able to let him take an elevator down to socialize with the guys etc. It all happens so gradual Joan, so just do your research and pick a place that you will be happy to be in once Sid no longer needs or wants the type of social activities you feel he needs right now, those needs will only be temporary.
You may find that you move into a retirement community and will still have to have day care or someone come in to stay with Sid.
Another issue is that I don't think it's easy to say the bank will just have to take what the house sells for. They can enter a lien against you for what remains on your mortgage. We were lucky that the bank agreed to take my sister's house back, but it was obvious that they could not collect anything from her or her estate.
Yes, I have also thought about the changes that will occur in Sid. I'm thinking about everything, and will do nothing until I talk to lawyers, everyone I know in the "facility" business, financial business, real estate business,and anyone else I can think of.
I am lucky in that during these 2 years of having this website, I have met an incredible amount of people in all of those businesses, many who have become friends, so I will have a lot of good advice in back of me.
Read your blog. Read all the posts thus far. All good considerations. Reasearch all you feel you need to. Then, with all input gathered, all needs and requirements listed, and all wishes noted. Then, make a "New Dream" home plan. One that will fulfill as many of the requirements and wishes as you can manage, and which you can see yourself being happy with later. Remember, you aquired your Dream Home 3 years ago. It was a goal you achieved and have been happy with. But our lives change and hopefully we make new dreams which become new goals. When everything clicks, you'll know exactly what the New Dream is and you'll go for it.
Joan, I know that at a few of the places I checked into, one or the other spouse was still gainfully employed and the other one participated in all of the activities offered on site. That's what you'd be doing, and knowing that your husband was in the company of others would give you great peace of mind. I betcha you WILL find a place that would suit you...and it sounds like the perfect arrangement for you two now. NOTHING is forever, I remember someone saying. If it doesn't work, you can find something else. I had planned to store some of my furniture before I sold it or gave it away...just long enough to decide if the lifestyle was going to work for us. Your husband isn't as far along as some of ours, and I say you should seriously think about it. You might consider renting your current home for the first year...and maybe the real estate market will improve somewhat. We can only hope!!!
Joan, I think you are the right track, as the others have said Sid's needs will only continue to increase. You have to make the decision based on what is the right thing to do for your present and future situation. I can't add much to the thoughts of the others
Now that DW is in a NF and I am by myself at home, I find that I don't really have the desire or motivation to do what I need to do to maintain the landscape in the back of our townhouse, keep it watered, fertilized and free of mosquitos etc. I am thinking that I need to move into a smaller place. A one or two bedroom apartment would work just fine for me. I have three bedrooms, a great room, kichen and a dining room full of furniture that I would I would have to thin out or dispose of. I find now that I only use my kitchen in the morning and a little on the weekend. I have narrowed it down to three choices, a very nice apartment across the main road from me, a 55+ apartment community around the corner or another apartment complex on a hill across the limited access highway from me. I may get out this weekend and take a look at them and see if I can narrow down my choice. It's the continued maintenance that bothers me.
At this point I may break even on my townhouse, the last one like mine that sold in our complex was a foreclosure and sold for the selling price my friends bought it for 10 years ago. Mine should go for a little more that that one did becuase of the improvements we have made to it over the years.
Yes,this is big decision and should not be entered into without some soul searching, evaluation and planning.
maryd CommentTime 15 minutes ago edited edit delete
Early o,n when I suspected AD in DH, I consulted a social worker. Her advice was to move to continuing care facility. I thought we were too young, then. Now, I kind of think I would like it, but it would be a hard change for Bob. We did move 5 years ago into a townhouse and he loves it here. I am still responsible for all the interior upkeep. He now acts like he is on a permanent vacation. Our yard work is taken care of by the homeowners association. We pay dues for exterior maintenance. It is a good situation, but right now I could use more services. The other thing the social worker told me was that we should move early in the disease or move late. It is harder to move an AD person mid stage.
Hmmm...writing a book, thinking about moving, maintaining a website, being an advocate, taking care of Sid....... Just what do you do in your spare time Joan??? Knit?? or Crochet?? The burden you are carrying seems pretty heavy to me....Are you making a commercial too for the energizer Bunny?? I can see you on rollerscates, pounding a big drum.......
Seriously, it is all too much for me, which is why moving to a "no maintenance" place where Sid can have activities and socialization, which would free me up to concentrate on what I need to do, which is make a living for us via the website and book writing, is an idea worth pursuing.
I would rather eat dirt than pack up a house for moving again. The thought of all that work is more horrifying to me than you can imagine, but if I have to, I have to.
No, I am no Energizer Bunny. As a matter of fact, I tend toward the lazy side. My ideal day is lying in the pool on lounge with a book. Writing it, of course. Ha ha.
I think now is the time to look into this while Sid is still okay with it. For me, I'm going to stay put. We discussed moving when he was first DX'd - 6 years ago. He asked if I thought we could remain here and manage. He had already lost all concept of finances and I've always handled them anyway. After checking out a few places, I determined we could stay where we are (even though it's a 100 yr. old home), and do some minor re-arranging when and if necessary for him. Even though none of our family is nearby, all our friends are here and help will be available when I need it (hopefully!). Now, I wouldn't want to move him - he's very comfortable here and if possible, I want his last few years to be where he is most comfortable.
It would seem to me Jimmy, that the 55+ community would have various activities at times that you'd be encouraged to attend. Apartments often have young people living there and their kind of fun would involve louder music, and activiites we'd not be able to participate in. We'd end up behind the punch table serving punch and cleaning up the kitchen.
I have been checking around the Austin area since Joan's post,... thinking she might have a great idea. Cannot afford a "buy in" property, but surely there are some that would be available to lease. Divvi...any ideas?
My DH and I checked out someplaces a few months ago. I finally told the real estate lady we didn't want a house where we would have to take care of the yard. I wanted to move from the condo (3rd Floor) before DH got too bad. After we got home DH decided he didn't want to move at that time and he still isn't willing because of the housing situation. So I guess it will be a case of move late when DH is further down the road of AD right now he is holding his own.
To those of you who advised me to move sooner than later because Sid's condition will decline, and it will be more difficult for him to make the move:
I take that advice seriously because of what happened last year with my father. He was 90 at the time, and he and my stepmother FINALLY moved to Assisted Living. He had resisted because he "didn't want to live with old people." Anyway, he is as "with it" mentally as any 50 year old I know. Better than a lot of 50 year olds. His memory is sharp; he is a good conversationalist; and brain is as organized as a computer. Just slower than he used to be.
We went up to RI to visit them and help out a few days after the move. I have NEVER seen my father as confused and disoriented, and bad tempered as he was at that time. The move was a major trauma to his entire physical and mental systems. He did settle down after about a month, but my point is - if my father, who was mentally sharp at 90, was upset by the move, I can just imagine what it would be like for someone in middle to late stage AD.
As it is, Sid gets upset if his routine is altered. A move is not going to be pleasant, so I would rather it be sooner than later.
Joan--The problem for me with moving is that although I know (somewhat) what the future will bring, I don't know when. After dx I seriously considered downsizing to something without property to take care of, but could find nothing I liked. Now I'm glad I didn't, at that point, how would I have known what to buy? If I'm going to try to keep Steve at home for the duration, which is my current hope, I'll need enough space for him and me, plus help. If I end up having to place him and it's only a home for me, I'd need a smaller place. A realtor said to me "You only want to move once." He was talking mostly about the expense, but I am in agreement because of the inconvenience. So my plan now is to stay in our home, modify it to accommodate Steve, and keep him here if at all possible. Later on when I only have myself to consider, I'll think about moving. Of course, I recognize that if I were in your shoes and were still working, that would change the situation significantly. It's great that Florida seems to have more of a variety of options for you to choose from than are available around here.
I agree with the others and especially Jane's post, that what Sid needs today may change tomorrow. Unfortunately, like everything else about dementia, this decision is very complicated and exacerbated by the downturn in the real estate market. I'm wondering, have the prices in retirement communities fallen along with the rest of residential real estate?
I had thought about remodeling our home to make it 'wheelchair' friendly. It would be quite difficult. Most newer homes, for example, have the toilet in a separate little room off of the main part of the bathroom. It would be impossible to "open up" and no wheelchair or walker can enter there or be manipulated around to accomodate him.
Same for our half bath in the hall. Sitting down, he cannot even reach the light switch in several rooms. I have 'tappers' on lamps, the little round buttons that sit on the table so he doesn't have to tilt the lamp over to turn it on and off. Sinks are too high so he can't reach the faucet when he's in his chair. I believe it would be much less expensive, in the long run, to find a place that was built with senior citizen's needs and limitations in mind.
I didn't realize when we bought into our 55+gated community that all houses were built to accomodate the handicapped. All doorways are extra wide, all door handles are levered. Bathroom counters have enough space to wheel right up with toe space under the front. Light switches are low and outlets are higher than usual. Shower is walk-in with no step and a huge grab bar. Lots of clubs and activities in a beautiful club house. Pool and spa area are lovely. We even have an in house TV channel with all activities and notices, this in addition to a monthly newsletter. Lawns are mowed and sprinklers maintained. I do my own gardened by choice. Would have been ideal if my husband was still with me. We moved here so he would have unlimited tennis. At least he did have a few good years of that.
bluedaze, can I move in with you? <grin> It sounds fantastic! My problem is that my husband is too far along to move anywhere. So I'll stay here.....plus, I love my job!
I have my yard work done for me, and so I only have the housework. My husband was never the social person Sid is, so he is happy with his movies and dogs. <sigh> Someday, though........
My DH gets confused when we're not in a familiar place. He is mid stage and this probably would not be a good time to move. We enjoy our yard, flowers, small garden, etc. and he is still able to do the mowing. Neither of us wants to leave this home where we raised our kids and have lived for 40 years. I do know the time is coming, though, and this discussion has been very interesting and helpful to me.
Joan, two days ago, my ideas about making a change would have been different. I wondered if you might come to regret giving up the home you love, especially if Sid declined rapidly after the move and was not able to take part in the activities you were moving for.
Then you had your fall, and I thought about my own declining health. And I remembered years ago, when we were first married, what it was like to live in an apartment. Once we closed the door behind us, we had no responsibilities except for what was inside our little apartment. It was wonderful. Now it’s constant thinking about what if the air conditioner dies and we have to replace it, or wondering if this hail storm is the one that will break out our skylights or cause us to have to replace the roof, and on and on. I’m sure you have a list of items yourself, things that can really cause you to lose sleep thinking about “what if”.
I look forward to having to leave our own home with about the same level of anticipation that I would feel if I were facing a snakebite. On the other hand, I also find myself disposing of things that I thought I’d never be willing to get rid of, and feeling a desperation to simplify things so that I can manage what needs to be done.
Whatever you decide, know that it was the right decision. We can always second-guess ourselves after we do something. But if you stay in your home, that’s the right decision. If you decide to move, that is the right decision. You are doing what you think is best for you and Sid, and that is always the right decision.
We moved into a Continuing Care Community 1 1/2 years ago. I wish we had done this at least a year or two sooner, but at that time the waiting list was long,and DH did not want to go. By the time we moved his condition had deteriorated so much that he really didn't understand. For a while he would ask--where do we go next? I believe he thought we were in a hotel. [He will still ask me where the bathroom is.] At the time of the move we were in our late 70's.
We had lived in our home 42 years; thus it was quite a turmoil for me to move and downsize. Our two daughters, who do not live in the area, came and were a great help. Many things were given to them, and the grandchildren. The rest were donated to charity.
I am so glad we are here. I could no longer handle the house, yard, driving, financial, etc. We have 2 bedrooms, 1 and a half bathrooms, living room, kitchen. Utilities, upkeep, and dinner are all provided. When I had to go somewhere I easily hired an aide to stay with him. He cannot be left alone.
He has no geographical ability. Recently I have enrolled him in a half day 'Intermissions' group here. He somtimes complains about going, but looks happy when I pick him up at the end. There are MANY activities here, but I have to take him with me so that limits my activity.
I thank you for all of your comments and suggestions. Yesterday (Friday), we went to visit an Independent Living Facility. I invite you to log onto the home page - www.thealzheimerspouse.com - and read the weekend blog about our visit. What do you think?