Haven't posted in a bit because I've once again been sick and in bed - NOT due to depression - but a recurring respiratory thing which becomes bronchitis, extreme fatigue, blah blah. Twice in six weeks and each time have been in bed for 5+ days at a time. First time I went to dr. and got antibiodics as thought it an allergic reaction to a plant, this time just like the last which was onlyh first of June, finally went to dr., got another round of antibiodics, prednisone, expectorant. He called it walking pneumonia and said some other things I was too out of it to even take in. I'm feeling a tad better today although still in bed am getting up for a few minutes at a time to try and get a few things done.
This is all prelude to something which is now occuring to me. I have no plan B for DH's care if something happens to me. Since he's 67 and I'm 58 and when this all started I was in fantastic health (I thought anyway) it never occurred to me I wouldn't be able to care for him as long as I could keep him at home which I planned to be for some time. Total reno on this house and move to this state all in that regard. NOW though as we're about to pay for some more work to be done here I'm wondering if I shouldn't stop and think about the possibility of my NOT being around. I'm sure I'll be fine (well not really sure) but the dr. this time kept asking me about my smoking history and I did smoke until 1995 and I was too tired and afraid to ask him if he was concerned about lung cancer. Even if it's only a slim chance of that, maybe I should be thinking of short and long term plans on renovation and care of DH.
Neither of his children (one is ours, he adopted my son when he was 5) and the other is his son who lives in California with wife and two kids. Netiher of them is really up to snuff on his condition I don't think. They've been around him but I doubt they can tell a whole lot and we don't really talk about it much. Have a bad history of talking with my son about it in the beginning and we're finally getting back to a good relationship. Neither of them ask. Not that they don't care, I think they're scared.
Since we're only two years in this state and my family I thought would be support is not any support at all but a great deal of heart break as I've spent months grieving over NOT having the family I always wanted. So, if something were to happen to me, I doubt it would be best if he stay here in this area. He has NEVER wanted to talk about the future and doesn't like talking about AD/FTD at all, seems to want to leave it to me because he trusts me. I've told him many times that an early diagnosis at least gives him the opportunity to have a say in what he wants for the future.
So, what to do? What do you all do about Plan B? First I know I need to talk with DH. His neurologists never refer to a stage so can't tell you that but he's still driving, seems capable of most things but really isn't as his executive functioning scores put him at 20% of population. He just got back from a 2 week trip to his sister's and handled the planes fine. Unfortunately she and her husband are 10 years older than him or they might be an option.
Okay, I'm exhausting just writing this so rather than try to make it more clear, I'll just send it off and hope for some feedback and clarity.
terry-you're very young but you do need to start making final arrangements. Start by getting POA and switching utilities, credit cards and the like to your name. Of course consult an estate planner or lawyer. Have you and your husband discussed DNR and are you his health care surrogate. Don't want to put you on overload but more help will be coming your way.
First Terry, it was from you I learned the term "executive functioning" which is where my husband was the most lacking. I thank you for that. I know you really like your town, and it is difficult to be positive about anything when you are not feeling well. Is there any way to bring his son up to date on his father's condition to allow you to have someone to share it with? Plan B would naturally fall on the son's shoulders, and the son needs to be aware of that. He IS plan B. How is your relationship with him? Even if distant, he needs to know.
Yes, and you've moved on from your disappointment about your family. You have been nurturing old and new freindships. Again, attribute it to not feeling well. I KNOW, when I was in pain, all seemed dismal, and as the pain passed, and my energy gradually came back, I was able to see things in a different light.
Terry, you're great, and you've accomplished so much in the past. Keep the light burning. Find a way back to the JOY. Remember the last trip to see your son, and how great it was.
Terry, I also worry about plan B but in my case we have 3 wonderful supportive children who I am forever grateful for. I have tried to keep them informed of papers, POA and other things including DH meds, phone numbers etc. Those of you without this in place have different worries.
A friend of mine always says "We have today, God never promised us tomorrow" and I don't know who that quote came from. You have been doing home renovations and when I was into that it really about did me in with all the stress and pressure. Money was going out like in a sieve. I didn't know when you upgraded to a nicer doorknob, etc. which just cost a little more would be added to the bill I owed to the Contractor in the end. It isn't just the doorknob, it is the light fixtures, light switches, doors, windows, every little thing. We didn't know we would find rock when they started bulldozing and blasting costs and additional fill added to my bill. I went to my Doctor and he put me on a anti-depressent, gave me ambian when needed and xanax twice a day or as needed. That saved my life. Now, 3 years later the money drain has gone down to a trickle and I am still on the anti-depresent, ambian maybe 3 times a month and xanax at bedtime if I don't take the ambian.
Now, 3 years later and we have both survived, we are so happy in our new place. Our new house is so much lighter and brighter inside, on level ground, 1 story and it keeps my spirits lifted every day. I adore it and so does DH. He NEVER made any of the house decisions, it was all on me, and sometimes I think that is better. He does have a large extra detached garage for his lawn and garden and tools and he wanted it a bigger and nearer the house and those were both good decisions.
Maybe you need to stop a little while, take a deep breath and rest until you get your health back in place. I stopped before finishing driveway, landscaping and several other things that did not HAVE to be done then. If you are happy with your house and where you live then later go ahead and finish it the way you can afford and would like. I doubt if you are going to have much support from family but stranger things do happen.
Like the others suggested try to have papers in place. I have told me kids if something happens to me first they will have to place my husband unless one of them wants to move in the house with him and be paid the same as a NH would cost, out of any money we have left. Since 2 of them live within 1/2 mile of us, that may be a option and one has already mentioned doing so. If something happens to me they will do what they have to do and so will your sons.
Oh yes, I forgot to mention, renovating almost did me in about 10 years ago. It is SO difficult to live in a place while it is being renovated. Never again. I finally burst into tears, (very rare for me) and told my h that it had to be finished fast, or I would lose it. It had been going on for over a year, with sawdust & all to contend with. Now you are dealing with the reality of Hal's condition AND renovations. That's a lot.
No plan B here and when I think about making one my mind goes blank. The children are 6 hours away with families to take care of. They are good kids and would help me all they can. I had a 911 trip to the ER not long ago and had to take him with me. I am 81 and he is 86 and cannot take care of himself so I know he couldn't help me. All my neighbors are as old or older than us and many are facing health problems too. I have debated the pros and cons of moving closer to the children. I had a post on selling home, buying another one or renting. Most of the advise I got is that I need to keep my home in case of having to have him on medicaid in the future. I can see being able to rent a place but moving and buying a house at this stage of the game would really be almost impossible. Like Scarlett...I'll think about it another day
I am in reasonably good health but I have talked with the family about a Plan B. We have it set up so nearly everything is in just my name and if I were to die it all goes into a special trust to be administered by DH's first wife, the mother of his two children. If and when either of the children decide they can step up to the plate, I'll have the administrator changed to one of them. Course we all know that at that point there would be no option but to place him. Maybe if after you get to feeling better and get your strength back, you talked to the son in California and let him know that your health is suffering and that he will have to handle everything if you can't, he'd be more willing to face the reality and become more involved.
Geez, Plan B......nope. My own POA delegates my parents at the moment. If not them, then it goes to my cousin Karl. A good man, with no ax to grind and a lot of business experience. What'll happen to John if something happens to me???? I dunno. If I die, I die. an no one will know for a while is what I'm expecting.
Whew! Hey I guess maybe I'm on the road to recovery because I've just started feeling RESENTFUL again. Drat and I was enjoying NOT having that emotion for awhile. Went outside to pull the dirty rugs off the railing of the badly built deck railing outside my bedroom window so my view would be of something other than dirty laundry. Then just started doing the little things I thought DH was taking care of while he was outside watering and stuff. And trying to get my room straightened up and boxes shoved into and under places out of my sight. And then DH comes out with a harangue at me about why I was moving the garden hose which was draped across the yard. He knows that's a pet peeve with me as we live in a historic area and our houses and yards are a big part of the scenery people come here for. Anyway, he starts yelling about how now he can not water the yard as he was planning to do this evening. Then he goes in and comes back out to tell me he's going out to hear some music. ====It just made it all so clear that we are living in SEPARATE worlds. And isn't that one of the hardest parts of all this?======
Bluedaze, yep I've done most of that, but do want to find an elderlaw attorney out here and get new wills and talk go her/him about whether we need a trust for DH should something happen to me.
Kitty, probably didn't make this clear. Both our sons are DH's sons. One (ours) through adoption and the other who is in California by birth with his first wife. But both are his just the same. However I do think the one in CA would probably be the best bet for plan B at least for now. He is married with two small children but his wife stays at home, is from Mexico and thus I believe comes from a culture which is used to the extended family and caring for elders. Our son in VA has a one year old and hoping for another and they both work. He is more high strung and has migraines so I can't imagine how that would be the best scenario for DH. Plus his wife who I adore works out of the home.
Kitty, thanks for reminding me how far I've come. Maybe one of the reasons I am feeling so low is that I felt I had come so far and now this. But the good part of this is that I think I will get on top of all the legal and logistical stuff.
Lmohr, Oh how i've been looking forward to getting to the point where you are now with your home. I have stepped back from it quite a bit of late so DH and I could have some fun and that has been great. But it is in a state where my quality of life is suffering. Try having NO BATHROOM DOOR for instance. Lots of decks but no entrance to a deck from our house! Any exterior work to be done has to be begun shortly as we're on a timetable with the historic commission (very strict) and whatever we don't get done in the next few months we will not do at all. Long story but won't go back before them again so this is it! But I am trying to focus on what is important to me and skip the rest.
Gmaewok, when I'm feeling better I think I will talk to son in CA and one in VA too telling them exactly what you're saying. I have to treat them equally - luckily they have a good relationship - and I have good relationships with each of them now. I used to try to keep them up to date and I do update them with annual neuropsych results but I don't think it has ever occurred to either of them that this might fall on them.
It's scarey to think he can't help me when it seems as though he could. When I went to the dr. I couldn't find his number in the book and DH couldn't think to call 411 or find a way to get the number. He could get the book, look it up, say he couldnt find it and then that was it. It's still a shock to realize no matter how he sounds or looks to the outside world and to me much of the time I AM ON MY OWN JUST AS THOUGH THERE WAS NO ONE HERE AT ALL.
Boy I really miss my mother and wish I didn't. She was so wonderful on the phone long distance after the DX but for who knows why (and she WILL NOT DISCUSS IT) she acts as though she wants nothing to do with me now that I'm 2 hours from her. She told my brother I call her every day and it drives her crazy. Whew talk about a blow! Well after hearing that a few months ago and putting up with some bizarre negative behavior from her, I limit my calls to once a month and only that so I don't have to explain myself to sister or brother. Wow, these kind of things make me realize I better start labeling things around here and make sure 911 and emergency numbers are on EACH telephone for DH and that both sons have emergency numbers of friends near us they can call if they're ever worried and don't hear from us. My son used to call my mother if he didn't hear from me, so think something more reliable needs to be available to both kids.
I wrote a blog about this - "Preparing for the Worst - What if you die first?" Log onto the home page, click "previous blogs", and scroll down to #285. Also, there is a discussion on this board related to that blog - http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=1113
We HAD a plan B, which was that if I died first, our son in San Francisco would bring Sid out there. Since he would be on Medicaid here in Florida, I figured it would not be difficult to get that approved in California. However, since California is now bankrupt, I'm not sure what plan C is.
I'm at a loss. Whenever I hear something new, I go numb......overload. What happens, happens. What happened in the "old days"? We just took care of what needed doin', right? Different times.
My sister has my power of attorney and I changed everything I could to pay to my kids, not to my husband. My thought is that if something happened to me they would have to place him fairly early and better than they have flexibility with that money rather than it just be spent down before medicare takes over. They are only 16 and 19, but hopefully nothing will happen to me any time soon.
I'm still working and I discovered that if I died before I retired and my kids were my beneficiaries they would get a lot more than my husband would if he was beneficiary. There are so many things--I just realized I should check where my life insurance pays.
Joan wrote:" However, since California is now bankrupt, I'm not sure what plan C is. "
Oh Joan, thanks for the laugh. Sounds like my life. We counted on the stock market, but ...., then counted on real estate, but had to lose money on last house we sold, and holding one we may never be able to sell, and the one we're in is a joke as we've paid out more than we could get back even waiting several generations!
But Joan, here's a thought. Hal's son lives in the Bay Area. Hal thankfully has Long Term Health Ins. - maybe they could room together sharing caregivers?
Oh my I'm exhausted. After being so sick and not moving much for several days to jump into a physical and emotional yo yo I think was just overwhelming to all senses. It's just amazing how I can be so stupid as to get caught off guard over and over again by the swift changes in him and especially to so easily fall back into thinking we're leading a life which is not at all possible because he can seem so normal if not put into a siutation he can't handle. When it was only his bringing me juice or tea a couple times a day and walking the dogs and appearing to do some yard work, somehow I FORGOT that anything more than that just isn't gonna happen. And when we have a conversation which appears so normal and he says all the things you'd think a husband would say, I forget AGAIN that he's just basically speaking from a memorized script and it is meaningless. I almost have to laugh at my own stupidity. After putting away the stupid (and what was my fuss about anyway?) garden hose I went out in the night with the dogs - two dogs with only one leash and a piece of clothing tied to the other because he had put it who knows where - I tripped over the hose he had draped again in the middle of the yard. Lesson learned: Taking a break from dementia, even if it is your own sick bed - can lead to some bizarre rentry!
I've been reading some of the past posts on this topic and have been greatly informed and now feel I have some plans of action.
Guys, my Plan B is now gone....I am having to put Plans C and D in effect. Friday I took two of my children to my banks to make them signatories on my accounts so that if something happens to me, they will have access to my funds for my husband. They all are willing to take care of him should anything happen to me.
I also have to redo my Will, and my Power of Attorney. And my beneficiary forms on life insurance. I'm certain that I am leaving other things off that I also need to change. Wow..so much to do....but I'm a good Girl Scout and I want to be prepared - for their sakes. There is always something that we need to do, isn't there?
Good to see you back mary. who said 'tell God our plans and listen to him laugh"?or something to the effect?
we make our plans thinking its done and we can settle into life with our affairs in good shape. at a drop of a hat lives and situations changes and it comes with no warnings. your other children will be on hand to take over when needed now.
something happens to me, for sure DH daughter will step in for guardianship and take over his care. probably NH- but without me in the picture that is ok at that point. they would not be able to care for him at home and i would be happier knowing he had 24hr care if that happens. with guardianship she would be submitting a report for his yearly expenses which keeps things in check-and he should be able to live out his life without issues hopefully. divvi
No plan B here. Don't have anyone to take over that would care. His sister has EOAD, his brother only cares about himself, and our kids are wrapped up in themselves and irresponsible on top of it. I have no choice but to live or just let the VA have him!
No plan B here. My cousin, whom I had put my life in his hands, has cancer now.....live and let die? whomever goes first will be there to greet the other?????