I asked this question on AZspouse on Facebook, but know many of you are not on there. My question is this: Have you thought about or actually moved into an Independent living facility since the DX of your spouse? DH has LBD. The independent living we are thinking about moving into is a Presbyterian manor that has an Azl/memory care unit. He knows that eventually he will need to be moved into such a unit and also that between now and then I will need the extra help. He is 61 and I am 60. Not even sure if we can qualify because we aren't 65. Anyhow, what is your take on this?
HI sheila1951. I agree, if you can -do it. Since coming to the decision that I will stay with my husband no matter how far he is in the disease, if he is in stage 7 in a home, I will be there until he goes. Living closer would be ideal in my books.
Sheila: Four years ago, after my wife had been diagnosed, but was still quite functional, we moved to an independent living apartment (at the insistence of our daughter). It was a good move. I no longer had to do the major cooking, cleaning, etc. It has given me other people to talk to at dinner, over coffee, etc. My wife's situation has gotten worse so that she is now on "Personal Care Plan", which means if I need help with anything, I just call down to Assisted Living (on the floor below us) and they send someone up. A couple of weeks ago she had a major bowel incontinence. I called assisted living and someone was up within a couple of minutes to clean up the mess. My only concern about the facility we are in is that they don't have a memory unit or nursing home, so if she gets to the point of needing that she will have to go somewhere else, either 1/2 hour or 1 hour away.
The place we are looking at has independent living, assisted living, nursing home and memory unit. Our kids don't think we should make the move yet. But they aren't in charge so we will do what is best for us.
Two years ago, I made the decision to move into Independent Living - In my mind, AT LEAST 20 years before I thought I would be ready. (I was 61; my husband was almost 67). It was the best decision I ever made. I have friends my own age outside of my neighborhood, and hey, I'm always considered the "young chickie on the block" around here. But seriously, I don't know what I would have done without the services I have here. It's what I need to help out with Sid at this time. For in depth information on my decsion making process, please read the following blogs:
Thanks Joan. I want to do it sooner than later myself. Tom is good with this as he can see the need to be closer to facilities that will aid ME in caring for him. We would also be the youngsters. I'll look at the blogs you suggested. Thanks again.
Just today we were assessed by what is called here, The Age Care Assesment Team (ACAT) and it turns out that DH has declined from being needing low care to high care. I was asked how much loger I can go on like this..I broke down and said not much. I told them about the recnt knife incident and permanent living in N/H care was suggested, but I don't think he's ready for that yet, while he still knows who I am, he will put up a big fight and do anything to get out. So we are going to try a Day Centre for 1/2 day week. Now he's agreeing to that today, as long as I stay with him at first... but tomorrow it could change as we all know. Oh, I so pray he will try it, it would be good for him as well as me!
Tom's big thing has always been to play golf whenever he wanted. We belong to a small country club in our little town and with our dues he could play any time. Now tho, I'm not sure he will remember HOW to play. This place we are looking at moving to has a public course withing a 3 mile radius that I would at least ride with him when he played. I am just so fricking ready to move out of our little town where "everybody is your friend", but nobody comes by to see him, call him to do anything, or nothing. We are the 3rd wheels in our social group (they are younger and healthier). I know that most people in town know us and know what is going on with him but dang it....man up and come see us. The town we would be moving to has about 20,000 people, Walmart, Alco, 2Dillions, and many restaurants and movie houses. Our current town (altho friendly) is about 2000 people, 1 grocery store, 1 pharmacy and that is about it. Would be much easier to go see a movie, shop for fresh groceries, eat out....etc...... I just want to be able to afford to do this. We will talk to our financial counselor tomorrow morning.
sheila I can see that you are not happy where you are. At least the non helpful people do know you and what is going on. People in a new town most likely will not be interested in socializing with you. You might wind up feeling even more isolated. I hate to say this-but as your husband declines as a couple you won't be able to partake of the more amenities of a larger community.
sheila, I think bluedaze brought up some very good points. I can relate to your situation about living in a small town - actually I live in a rural area and everyone here knew of dh dementia and other than our children ( who were great) no others visited. We only seen people we knew - when I would take him to the few places he still wanted to go - while he was able. But, at least I did see people I knew - almost daily - people I have known forever and they were friendly and we would share information about other people we mutually knew.
Some day - you are going to be alone - and I think if you moved from your comfort zone area - you will miss those friends of a lifetime. It is hard making new friends as we get older. Even though they are distancing themselves now - because they really don't understand how they should act - it is comforting to see a familiar face when you go to a local store or restaurant. Good luck whatever you decide to do and remember you have many friends here on this site - who do understand.
As I'm sure you know, there are many intermediate steps you can take before you have to place your husband--bringing help in, a daycare program, etc. I guess my main question is--is your motivation for wanting to move fueled mostly by dissatisfaction with how people in your community have reacted to his illness?
This issue has been discussed before here. It depends a lot on your personal circumstances and how you view the retirement communities. Some of us who have spouses with younger-onset dementia already feel we have been thrown into a premature "old age" and moving to a retirement community would only exacerbate that feeling. About 10 years ago, I was looking a those communities with my parents--for me, to move to one during my 60's would be surreal. None of my friends (most of whom are older) would even consider it either--some are still working, some travelling, some going between homes in 2 cities. Of course, none have a spouse with dementia. However, I guess it all boils down to weighing the pluses and minuses, as with any decision.
One thing I've always wondered--suppose someone moves to the type of community you're considering, and then ultimately, the family isn't satisfied with the care at the ALF or NH within that community? It's certain not a one-size-fits-all for dementia patients--many here have posted dissatisfaction with one facility their LO was living in and that they were moved to another place. If that occured, wouldn't that really negate the advantage of moving to such a community?
Something you might want to consider. Is there more care places available in the larger area if you have to place your dh? Also, is the larger area some place you might want to stay if your dh passes on rather then the small town you live in?
Once my dh found it difficult to carry on a conversation is when I moved. To me it was very diffiicult to be around friends when I had to carry the conversation for both of us and he would just sit and stare out the window or something. So we have very few friends now and I really kind of like it this way.
When I retired we moved from a relatively large city (30,000) to a small town (2,000) about an hour away. For a while we kept in touch with our friends from the larger city, but the distance soon made that not practical. In the meantime we made some friends in the small town. Then, 4 years ago, we moved into the retirement Inn, 20 minutes from the small town. We have made more friends here. Most of the people have had a relative or friend with AD, so they understand. When DW starts chattering at dinner, whoever we are sitting with looks at her and makes some comments, so she doesn't feel left out, even though they cannot understand what she is saying. What I am saying, basically, is that in a retirement Inn there will be others in the same situation you are in, and you will make a new group of friends, particularly if you sit with others for meals. At this point, I plan to stay in our retirement Inn after DW passes (if I don't go first).
You all make very good points. Both pro and con. We went to look at the cottages and duplexes today and had a really good conversation with the counselor there. If/when we move I will be able to volunteer at a preschool that is on the campus (I was a speech/language assistant for preschool before quitting to stay home) which would be wonderful for me. I grew up 10 miles from the town we would be living in so I actually would be closer to my old friends. We have only lived in our (now) little town for 9 years so really have no ties here.
JudithB....I can totally relate to the conversation part. That is where we are now. When we are with friends he doesn't join in the conversation because he can't follow it...or he talks stuff nobody can understand. It's really hard on me to be around a bunch of people when I know he doesn't have a clue as to what is going on. I would rather stay home....it is less tense for me.
We have been put on a waiting list for the independent living. Who knows how long we will have to wait but I think we are making the right decision on what is best for the both of us.
Thanks again for all your comments. Gives me more to think about.
Our eldercare attorney tried really hard to persuade me into moving us to a CCC (Continuing Care Community), but I resisted for all of the reasons stated above. He was just trying to get us re-situated before dh's needs became too great for me to handle alone - I can see the logic there. However, I could not see myself living in a sea of silver hair (although, I have to admit, I already do live with lots of retired folks with silver hair, they're just younger and more active). I also love my home, neighborhood, friends, church, etc. Although, we don't have many visitors, I do communicate quite a bit with my two best friends and visit with them on occasion nd talk tothem at least a couple times/week. I don't feel too isolated yet, and all of my neighbors are aware of dh's condition and keep an eye out for him when he goes on his solo walks. My dh IS getting to the point soon where I won't feel comfortable leaving him alone for any length of time, but, for now I can leave him all day if need be, I just don't like to do that.
I wouldn't be too hard on your community for not coming to visit; I think people are busy with their own lives and although they may be thinking of you and your dh, they really are clueless about what they can do to help. People are funny when it comes to a terminal illness of someone that they may know, it makes us so uncomfortable, don't know what to say or do, so we do nothing. Perhaps you could invite some of them over a time or two so they can get comfortable with your husband and his condition?? Just a thought.
Good luck with your decision. It sure does suck that we are forced to prematurely make these decisions. Our lives are no longer our own.
Just found out yesterday that we may have a house in independent living sooner than later, which would be wonderful. 2 days ago I awoke to HD thinking the gas was shut off. He cranked the thermostat up to 90, had tried to call the gas company...thankfully he can't read a phone book anymore. AND he actually moved the hot water tank an inch. Full of water but he worked and worked to move it so he could re-light it. Of course the gas HADN't gone out. But absolutely made me sick to my stomach. Now we are getting down to the serious stuff that affect lives. I tried to explain how dangerous it was but he said since there wasn't anyone else to do it he had to. I seriously thought I was going to puke. Do I contact his doctor about this or do I just not sleep anymore?
sheila1951--No, not sleeping isn't an option. I don't think this is an issue where you want to introduce/increase meds until you have made your environment AD-proof.
My first thought was putting in a plexiglass box, like some places put over thermostats and need a key to access. As far as the hot water heater, I would also put a lock on the door to the room where it is located. It sounds like you are in the stage will you need to take safety precautions. I had to do things like put tape over the temperature controls in the fridge; restrict access to burglar alarm keypad, etc. Think of all we do to protect toddlers around the house and then transfer that thinking to the stuff your husband is apt to get into. I'm sure others will be along with similar horror stories, it's part of the deal!
Sheila1951, you lock EVERYTHING! I've written on this blog about my warden activities w/heavy key ring. Knobs off stove; bicycle lock on fridge, lock on door to basement--as well as locking all doors. My house never looked tidier w/knick knacks in boxes, etc. TRADE-OFF: Fibber McGee closets (if you're old enough to know what that means. If not, it means closets are jam packed w/STUFF.)
unfortunately the stage that is most dangerous is where they=YOU are thinking they are still capable of pulling off handyman jobs that require a professional. anything with gas, electric, blades, gasoline, matches/lighters, heavy equipment, ladders, etc should be off limits. like zibby says many of us have had to resort to locks on doors that keep them out of danger areas. i think they have child proof knobs for appliances now. and even electrical outlets are danger if they stick something into it. just like child proofing for a toddler. its hard to accept a time will come that we have to take these extreme measures to stay safe. trying to light a gas valve and matches makes me shiver just thinking of that. divvi