I decided to write and post my blog before I do all of my running around and errands today. I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog - "Sooner Rather Than Later". It is a series of decisions that are best for me. I would like to hear your opinion. Please post comments here.
I thought we had one last vacation in us-WRONG. I had been working and didn't realize how impaired hubby really was. I did the driving (which I hate) and put a map in hubby's hand. Every step was numbered with arrows and different colors. He read every road sign out loud but couldn't get from 1 to 2 on the map. Once we got to Williamsburg he was unwilling to do anything. I sat in our lovely time share and played on a computer. Continued our drive north to visit new grand baby and again he was clueless. Our entire visit I worried about our drive home. As we got closer to home he insisted each exit off I95 was ours and I had to grab the wheel to keep him from turning off (he had insisted on driving the last few miles). His doctor's office had actually called us several times on our trip to see how things were going. They knew better than I that the whole idea was a crazy thing to do. But at least hubby did see the baby.
Joang, this is an excellent blog. I took inventory with what you said: We have all of our legal documents in order; have checked into the various agencies in our small town; and done other things you mentioned. We really can't move into a different house even though we don't need all of the space in this huge house (but I love it!), because we can live here much more cheaply than moving elsewhere. By staying here we can hire the maintenance (my wonderful handy-man- who comes and sits with DH every week). Downstairs den can easily be converted to a bedroom by putting up french doors between it and the dining room. Full bathroom is just off the den. So if he ever has to stay downstairs - not a problem. And, at his age(86), and so far, doing very well with AD, I see no reason to upset the apple cart with a move. We can't travel anymore either - not even to relatives. Haven't seen my 91 year old mother who is in a NH in FL - for over a year! Haven't seen my son, who is on transplant list for kidney and pancreas,for over a year. He can't travel - I can't travel. Makes it tough on all. So, I just try to make the home that he loves so very much as comfortable as possible for him and me.
I surely understand your situation and believe you have done the right thing for you and Sid. Thank you again for this wonderful place!
Joan, you make a good point in your blog. I agree with you that there are things that need to be done sooner rather than later - the travel is a great example. My question is how do you balance too soon with soon enough. For example, dh loves to garden. He spends most of his time in the yard. I don't want to move as long as he enjoys what he's created here, but when he can no longer do that, will it be too late to think about moving? It all seems like a real balancing act and the decisions are hard to make alone. Isn't this fun!!!
Joan, the first time I got up enough nerve to visit the alz/facility, I nearly threw up when the lady told me, its often better to place them 'sooner rather than later'. But every day brings a new appreciation for the truth in that statement. Not long ago, I took another more formal 'tour' and managed through it much better. This time I was told, you know they do better when they have a schedule to follow. We don't have a schedule here other than regular meal times. More often than not. I'm going about whatever I'm trying to do.. and DH is sort of going in various directions.. in and out of the house..not exactly sure what he's doing.. Or at least it appears that way. Risperadone has been a saving grace.. we've upped the rx. to .75 and I think its working.. but in my gut, I'm thinking that if I could find a living setup like you have.. DH would be much better off. He's too social to thrive out here so isolated. A routine would benefit both of us.. and I've been thinking about moving us for at least a few months, if only to get the cattle and farm issues tended to and then to possibly transition him for placement. I think we may wind up making it harder by waiting until later..
If you are a planner (I am), doing sooner makes it a lot easier to deal with the decisions when you finally need to. I researched facilities almost a year before I placed him, I am very glad I did as it made the selection a lot easier. I was talking with various people about home help a good 6 month to a year before I needed it. That again made it easier when it was time - it also gave me lots of time to work out my approach to get him to go along with it.
With the "wheres" decided, I was left with the emotional difficulties but at least there wasn't other noise as I was dealing with that. The main negative I ran into was that he children had a hard time dealing with the fact that I was doing that research. I think they were very concerned that I was going to put him in a "home" and go away and ignore him.
Joan, so are so right. I've been living by the 'sooner rather than later' adage.for quite a while. that's why we are going to Costa Rica in Oct to see his son, even though we havent' been invited. if I wait for an invitation, we probably won't ever go. Vickie, can't you get temporary respite care for you DH so you could visit your mother and your son.... sooner rather than later. time passes and all too soon, we've missed our chance. that was my feeling when my kids were growing up... their childhood would be over to soon. Now that's how I feel about others, they might be gone, and i'll miss the chance. think about it.
I agree with the "sooner rather than later" thinking. Unfortunately we waited to long for any traveling. We were planning to go see Mount Rushmore, but things progressed so that now we can only do short day trips. Last spring I got him on the waiting list for a nice nursing home about 25 miles from here, and now I, with the help of my daughter have arranged for an Alzheirmers Care Facility. Both places know we are not ready for their services, but they suggested we put him on a waiting list now so when the time comes it won't create more stress. DH went to both facilities to tour with me and he seemed comfortable with both places, though he really liked the ACF. The legal matters we took care of shortly after dx, so no stress there. Glad that part is taken care of.
Joan and My other Friends: That was a wonderful blog that Joan wrote and I am just starting the 'sooner' part. My DW was just recently in a nursing home/rehab for a broken ankle. Even tho she hated every minute of it, I realized that placement is coming sooner that I had thought it was so I signed up on their waiting list. You don't have to take it when your name comes up, but, it is there if you want it. Also went to an Elder atty to see if I would have anything left to live on but my social security when this is all said and done. I don't like doing these things (having my will changed too) and her not even knowing about any of my actions. I feel kinda sneaky and low down like I shouldn't be doing them behind her back. But, then I realize that she wouldn't understand nor remember anything anyhow, but, there is still an empty feeling and I think there always will be. In the meantime, I have made arrangements for both day care and in home care for at least two days per week. Might have to go three days or more, but, she is terribly against any (all) of it.
The moving part is also important, but, I am the one that is resisting. I love our home and don't want to move, but, it looks like we will have to.
Thanks to all of you for giving the rest of us your opinions and feelings on this web site.
Joan, you blog really hit me, because I have done next to nothing! Procrastination is my middle name. I think I still live in denial, and don't want to face the truth, even though it keeps slapping me. We moved to a very remote location, way away from anyone. My DH is totally not a social person, and he is totally happy here working on his garden, and other various things, but the work around here really gets to me. I have had to learn how to do so many things, crawl under the house and install phone lines, work on the pump for the well, it is actually funny. I still have guns in the house, and have not seen a lawyer as yet. Although DH did sign a "power of attorney" paper, and it is notorized, I'm really not sure if it makes any difference. Haven't found anyone but the doctors office who even wanted it. So, after reading that, I know I need to get busy, so many things to think about...thanks for the reminder.
Joan, i too have been thinking and planning for a while now...i did the "home help" thing for 7 months, but now do the "day program" 3 days a week...BUT, it may come to a more permanent situation in the near future...or, hospice may be called in, perhaps within 4-8 months...all that said, I decided to make what I expect will be our "last trip" to NYC to visit our daughter, in November...she has her own apartment, so that will be helpful. Hoping that husb can make it until then. He is still losing weight and sleeps more & more...life just sometimes seems to be drifting by and away...how I so want more time...don't we all...but it is not to be, I guess.
I didn't read all the posts on this thread....just got home from visiting John. But I only wanted to add one thing to Joan'sblog for today. I know it's too late for all of us. I'm talking about preparing for bad times in the future (and your future happiness) by beginning your plans for later life as soon as possible. Whenever I've gotten to talk to young people, my daughter, hairdresser, etc., it is my MANTRA! PLAN for your FUTURE! Life Insurance policies, Long-term care insurance policies, advance directives, wills, all of that (as boring and unhappy as it sounds) should be as important to young couples as having adequate health insurance and paying the mortgage (or rent). All the time, I think, "if my husband had only been responsible, if I had only been not so trusting and insisted on being "in" on what our financial status really was". I DO NOT wish for anyone just starting off in life with a partner to go through this hell ill-prepared.
Better watch out, stunt girl, that sounds like politics to me ;-) Aren't lotsa people saying that giving people the ability to do these things is saying that euthanasia will be mandated?!!
No, we're not getting into that debate here. Just planning for the future. Actually, once this move is over, our finances and property will have changed, so we will be re-visiting the Elder Law Attorney. I think she said that it's a good idea to update the paperwork every 3 years. It will be 3 years for us in the spring, but with all the changes, I figure we should do it "sooner rather than later."
I have done the same thing with my children and close friends who are younger that StuntGirl is doing. Get that Long Term Life Insurance...Imagine if we had $3000-$4000 a month to help us with care for our LO's. Incidentally ...I HAVE IT, but my husband did not believe in getting it, said he made enough money to leave us in good stead. (He had it all in the stock market! HELLO!) I married him only 18 years ago,...and he had retired from his career position with DuPont.) We did write new wills, health care directives, and Power of Attorneys. We didn't marry young and insurance plans were in place. One of his major life insurance policies HAD to go to his former wife of 34 years, per court order. He was 64 years old when we married. Insurance would have been very expensive and he had some physical health problems by then. Claire, she was making a very good point...learn from our mistakes if possible. Not everyone gets Altzheimer's Disease, but life is uncertain. People die at all ages from a myriad of causes. Don't wait until insurance is prohibitive to buy it. Buying Long Term Care Insurance is a way to look out for your family so they don't have to do what WE do....most of us are dealing with loved ones without it. Marilyn's husband has it, but I don't know off hand of anyone else's husband who does.
Joan, great post as always. I am sitting here looking at "sooner rather that later" as pertaining mostly to Alz. FTD sneaks up on you then wham, it's later all ready. By the time we got the correct dx, it was too late for that last trip. We managed to squeeze in one weekend last spring during which I had to tread very carefully, to keep him on track. So I guess the lesson here for all of us is don't pt off what you can do today, enjoy everyday as though it were your last. I walked into the hospital Sunday and Jim didn't recognize me, I arrived today and he is now confined to a wheelchair. This incideous disease rushes you through life.
I have mentioned this on other posts- My father and stepmother were very smart planners. He was 59 and she was 49 when they married 32 years ago. I don't know exactly when, but they took out a LTC policy when they were both healthy, and now it is paying $6200 a month for their Assited Living Facility, and will do so for 6 years. Well, well, well worth their investment. We didn't take one out when we were able because it was too expensive for our budget. But I would highly recommend it for those who are healthy and able to afford it. joang
I remember the last time I really had to talk John into seeing an insurance advisor about his getting life insurance. Like NancyB, John didn't want it and assured me that "wealthy people like us" (I believed that) didn't need life insurance. (Was he already getting sick?...he HAD retired...this was in 1994). He spoke to one rep from one company. He decided it was prohibitively expensive, couldn't fit it into our "budget" (we had a budget?). Looking back, if we had seriously looked at what was happening around us financially (I never had a clue....I had an 'allowance' back then), we could have sat down together and made some serious life changes, looking after ourselves for this time in our lives. Did our children HAVE to go to all private schools (elementary, H.S. and college)? Did we HAVE to have several very fancy vehicles? Did we NEED to have a 61' yacht and pay rent for an enormous berth? What was with the huge home on the fairway, the "help" and the European vacations (and all the pictures no one ever looks at). My point is, planning for life TO COME is so very important. Even if you have to live more simply. If I only had it to live all over again! I'D be making the decicions!! Joan, I'm not trying to pull us off topic in any way. It's just that I love my kids so much (yeah, those rotten things I talk about all the time that never even call their dad), and I love all the young people that are in my life however limited it seems right now. I just feel like its SO IMPORTANT to drill, drill, drill this into thier heads as they move into relationships that may be of the permanent nature.....it should take NOTHING away from their happiness or cause them undue fear to PLAN for the distant times that will come. Just like taking on a mortgage or deciding to bring a child into the world.....nothing bad comes of good planning. Thanks for listening....now everybody, go talk to your grown children who are busy paying into thier 401k's.
Agreed, jen. I wish we had gotten LTC - but by the time it was widely available, he was already well into his 70s and it would have been prohibitively expensive for three years of coverage (and of course that would most likely NOT have been enough) - he had retired at 60 and I at 62. And though we had/have good lifetime pensions, we can't afford more than 2-3 years for him to be private pay somewhere.
NancyB, my DH andI both have LTC ins. and I remember reading at least a few posts by others who do also. I think I've used that fact though to avoid doing all the things I need to do. I started after reading Joan's blog looking on the internet at nursing homes and was shocked that there won't be one close to me (at least 45 min - 1-1/2 hours away) and even those didn't sound very good. Maybe you have to visit to know. It think even after actively living this for 3 years I still haven't reached ACCEPTANCE. Every change is still a shock. I still can't believe it. Sometimes I don't believe it. In the beginning I tried to prepare for all possibilities, moving, renovating, getting DH into just the right neighborhood, and I'm still trying to deal with all that. The good news he's had a very good and happy last two years. I have had the most stressful grief filled years I could ever have imagined. I've got to get that turned around for both our sakes. Sooner rather than later. Or I know I'll regret it for the rest of my life.
We both have LTC insurance. We discussed it for some time and kept putting it off. His sister had it and died without using it, so in her case it seemed as if she'd wasted a lot of money. But then my dad got dementia. When he went into a nursing home and Mom had to do the spend-down to get him on Medicaid, it became clear why we needed it. We got it about 10 years ago. I am so glad we did it then!
I honestly don't know how this will all turn out in the end, but today we picked up the keys to our new villa, and when the woman gave us the August activity list, there were two things Sid was already interested in. The Men's Club is going to the Outback Steakhouse for lunch tomorrow, and next week, they are going on a day outing to a casino and lunch. He can't go to the Outback, because tomorrow is our Support Group, but he's all set to go to the casino/lunch outing next week.
Which, if it goes well, makes me thankful I decided to do this "sooner rather than later" while he is still able to enjoy activities.
Oh, and for me - the woman told me that the weekly cleaning service that comes with the villa also changes and launders the sheets!!! Well, I certainly am pleased to have that service "sooner rather than later".
The memory care unit my husband is in is classified as assisted living even though it's much better than the nursing home he was in here locally. He got 100% of his long term care moneys here at the nursing home, but receives only 33 1/3% of it in the memory care unit in the city 2 hours away.. He is cared for much better there where it is classified as assisted living..His care is remarkable at the new memory care unit - both medically and socially.. But this will drain us eventually. It really brings out the paranoid part of me because it seems that everyone is out to divest us of the money we scrimped and saved for our old age. It's good to hear from the rest of you, but I'm sorry that you all have to go through this
My husband's care at a dementia ALR was covered 100% by our LTC. I paid for the first 100 days. Once that was over I didn't even have to pay his premiums. What almost broke me was the private aide I had to hire because of his violence. With med adjustment that eventually eased the problem.
Joan - I don't know how you do this - every time I check in to read your blog - you bring everything I am dealing with - HOME. When I read this note - it sounds like the same questions I am asking myself - my husband has now been in a NH for 5 YEARS, and a lot of these thing really slammed into me. Medicaid, guilt, what if's, why, they all seem to hit the nail on the head. Even after all these years - I do not have the answers. I have not checked your blog for awhile - but I do and here it is..I have been to court - I think 3 or 4 time, I had to fight to keep my home - when the money ran out - they TRIED to take my home. I won. They fought me about paying the bills. Again I won. This in itself is enough to wear anyone down. The NH has lost Ron's glasses 3 times. He can not put them on or take them off - how can they keep losing them? I just filed ANOTHER abuse report - their answer was "A needle stick - gone bad". I am not stupid and I will not allow them to treat me like I am. I hate their condescending attitudes. I am ready to become an ostrich - stick my head in the sand = and let the world pass me by. This is not an option - I have to advocate - I am not sure but that this is a worse job than caregiving. I am afraid I am going to lose my battle before he does.........
Ruth, I found it worse than the caregiving, and it does go on and on. It's more than 2 years now since my husband died, and just when I think it's over, there's something else to attend to. I've won all the battles so far, but this last one maybe not. I know what you mean by wanting to be an ostrich. I'm sending you best wishes for lots of luck.