Charlotte, enjoy Quartsite; it's really a "rockin' " place in the winter w/living accommodations springing up all over the desert like prairie dog mounds ;)
Well, I hope I did the right thing. I just brought my wife home from the hospital. Yesterday she walked the loop in the hospital with no difficulty. When she was discharged she was taken to the car in a wheel chair. When we got home I could hardly get her to walk. She kept stopping and then saying she was falling. It was quite an effort to get her to our apartment and into her chair. If I can't get her up to walk to dinner, or even to the bathroom, I don't know what I will do.
Charlotte, you will chuckle at this - we had a 24ft RV parked at Cherry Hill in Pr. Geo Co Maryland. PJ came home one day (before AZ was id'd) and said to cancel the insurance. He had gotten rid of the RV (in his name only, so my signature wasn't needed on any paperwork.) I cancelled the insurance. Almost 18 mths later, we get a call and I am only one who answers the tel, so I get the call fr the RV campgrounds. They are selling the property and need to get rid of our RV.
Downstairs I marched - thought you got rid of the RV? Oh, I took the tags off, thought that was all I had to do. So I tell the campgrounds to scrap the RV. This week, got a letter from Ford Motors that there had been a recall and that we are still listed with the State as owning the RV.
Now I have to add this to my list of things to solve.
Your being able to still enjoy the RV sounds wonderful. Keep truckin.
Marsh, can you just place her in a wheelchair and wheel her to her meals and to the main lobby? My husband got to the place where he couldn't walk, but he would sit in the wheelchair for me - and I still took him out to dinner and the movies for several months that way. Just keep the wheelchair close by and help her stand up (and as I say to my husband "put your hands on my shoulders and let's dance" and I back him up to the wheelchair and tell him to sit down and he does. Wheelchairs can be a pain, but they are a lifesaver too, if you want to take her places.
yes sounds like a transport chair is in order now marsh. you dont want her falling and you want the safest way to get her to meals. hope she rebounds. divvi
I will probably need a wheelchair of some sort, but for now I couldn't handle her. Thus, she has gone back to the hospital. They will put her on a "swing" bed for physical therapy to get her stronger. In the meantime I will work out arrangements with hospice, homecare, etc. I won't bring her home again until all arrangements are in place.
ehamilton, Each time I assited Jim in standing, I would ask him if he wagnted to dance? He would always say "No" and I'd reply, "Damm, I'm waiting for you to forget that you don't like to dance" LOL :o) Good Memory!
Last evening I went to an AARP meeting held in my community. I went because a friend wanted company-I had no idea what the topic would be. Guess what-the topic was Alzheimer's. As we are a 55+ community interest was high. The speaker spoke mostly about her mother. At the end of the program she asked for questions. Before I knew what I was doing I was on my feet and introduced myself as a dementia widow. There were a few moments of stunned silence. I got on my soap box and implored the audience to reach out to their neighbors who they knew were caregivers. I explained the isolation and need to get out of the house. I could tell by the looks on most faces that while most people knew something about the disease they didn't relate it to spouses. They were shocked when I said the disease was terminal. After the program some folks actually skipped the coffee and cake to speak with me. One by one I do believe we are getting the word out.
Good work, Bluedaze. Funny. although I had family experience with AD before dh came down with it ("came down with it", now there's a good description) and, yes, of course I knew it was incurable, I never thought of it as a terminal disease. Now I do, of course, but I notice that other people do not think of it that way.
I've just been filling in cancellation insurance forms to try to recoup the price of Siem's ticket on our Christmas trip (he didn't go) and they want to know if he has been diagnosed with a terminal illness. Whoops. Wonder if that means the insurance will not pay out.
Jeanette, I got back the $2800 for our r.t. plane tickets to London after I had to cancel a cruise. TravelGuard sent me 8 pages of things to be filled out, one by his doctor and the rest dealing with every medical person he'd ever had contact with. After a month I called to inquire about the refund and was told it had been sent to an evaluation committee and I'd hear in two weeks. Another month went by, I called again, was told once more to wait a little longer. The, lo and behold, the check arrived in the mail. Wow! The doctor had said that he was unable to travel unless he was heavily sedated and that I wouldn't be able to handle him in that case.
Jeanette, glad your trip here was good and that Siem was well cared for. I too can't believe he's slid so far in the last couple of years. My husband's getting less and less responsive, some days sleeps all day and night, and some awake all day. Strange. But at least all that walking up and down stairs to check on him is good for my new knee - I won't let myself use the stair chair much.
Oh, Marsh, I'm sorry Marge has gone down so, too. I'm glad you know your limits and sent her back to the hospital. We've just gotten a Hoyer lift here, to get L. onto the commode so he can be changed, etc, and although I think it will be much easier for us to use without straining muscles, it does seem to be a major operation!!
We enjoyed a rare dinner out with neighbors tonight. For the third time, I noticed that our neighbor made many errors. I immediately suspect dementia/Alzheimers. Our friend is 83 and used to be an outstanding contributor to many neighborhood organizations - president of several boards. Am i projecting? Do others observe and suspect undiagnosed cognitive impairment out there?
Oh, yes, Brooke, I see it and keep my suspicions to myself. Sometimes I'm approached by wives asking if I see recognizable symptoms in their husbands. I try to remain noncommittal, they don't really want to hear. I just let them know I'm willing to talk alone sometime if they want. So far (in two cases) they haven't.
It's also true that in people who are much older the dementia is not so striking or fast-moving, often seeming to merge with the ordinary expected effects of aging. My Mom is 89 and definitely has some form of beginning dementia, which upsets her totally, and that in turn makes things worse. But it's absolutely nothing compared to dh. She still lives alone with the help of my brother and his wife, God bless them.
I think people who haven't been exposed to dementia notice changes in others too, but attribute it to normal aging...who wants to think it's dementia? It isn't until it is really pronounced that most people want to seek out an answer. We, on the other hand, who have been living with it up close, are much more attuned to picking up on the signs.
marilynn, I agree with you. A while ago a friend was telling me some things about her husband I suggested she might want to take him to a neurologist. Her response was she didn't think he was that bad yet! How bad does he have to get before she takes him? I haven't seen her for a while because he had shoulder surgery and then back surgery and I wonder how he was after them and the anethesia.
Actually I get nervous when I forget something now, afraid that I too would develop this devil. Hoping it is just stress that trips my memory up.
Been following Marsh's problem about "helping" his wife at home. When Paul falls, fortunately not for 5 mths that I know about, I can't lift him. So far what the therapist taught him couple of years ago has worked and his strong upper level muscles make it eventually possible to get himself up. All I can do is coach him to use the method we learned. Have had to call fire dept for assistance.
I think friends see in our struggles what they could be facing and run from the possibility. Can't blame them. However am convinced that the meds have slowed PJ's memory loss. The other physical issues - don't know just what is AZ or is it something else, PJ does have severe sleep apnea which affects his swelling legs, etc. and probably affects his balance and walking. He has prostate problems too and so never sure if those issues are AZ or other. He sleeps most of the time, won't use his hearing aids and so the TV is on loud! Patience - I'm trying.
It snowed here today and PJ can enjoy the birds at the feeders on our porch. Have good day friends.
Last week we received a call from a co-worker of DH. (he & DH were forced (retired) out of their government jobs at the same time). He heard that DH wasn’t doing well, but wasn’t sure what that meant. We went out to breakfast with him & his wife & DH recognized him. I was able to give them the short version of what has happened in the 7 years since they retired. Then DH’s friend told me that it all makes sense now. How when they were still working DH would ask him numerous questions on how to do this or that (things he should have known how to do). He would get frustrated because he couldn’t understand why DH couldn’t remember how to do these things. He knew that something was wrong, but didn’t say anything, but now he says that it all makes sense.
Brooke, No I don't think you are projecting. I found myself sensing something wrong with my aunt after my mom's death from this disease. I told my cousin of my concerns and at first go the usual rationale from them but in the end I was right. I think because we have gone through this, we do see the telling signs and if we can warn another's LO to the worry we have, perhaps they will take action so that the earlier their LO gets a DX and help the longer he or she will remain functional.
Deciding when and how to bring this problem up to another can be delicate. If they ask if you see changes be truthful. If they don't mention anything and depending upon how close you might be, one could suggest they talk, that you have a concern....and delicately go into what the concern is. Or if you have been with the person and You observe something bring that up. My DH would go with the guys and for sometime they did notice things, but not once did they say anything for as much as a year before I started to get him to doctors to rule out what the causes could be.
Well I did it. DH had a TB test yesterday & we get it read tomorrow. I called the adult day care facility we toured last week & arranged his first day for this Friday. I’m a bit nervous. I think he will like it once he gives it a chance. The other day he said that he thought he’d give it a try, as long as I am with him. I know that the staff will be distracting him so that I can leave. If all goes well, the first thing I am going to do is take myself out to breakfast! To all of you whose LO’s went to daycare, how did you handle the first day?
Elaine, do you mean after I did cartwheels on the way to the car??? Just kidding, it is just like sending the little ones off to preschool.....you wonder how they are doing, you wonder how you are doing, and then you go and enjoy the freedom and, in my case, my shoulders relaxed for the first time in years. I did make a card that said...."Sandi will be back at 4:00 pm to pick you up." I laminated it and the staff would give the card to him when he would get restless and wonder where I was. Of course, he could still read and understand at that point.
Just do something nice for yourself....you deserve a break....
When my wife first started going to day care I would stop in every morning about 11:45 and join her for the lunch at 12:00. I stopped doing this after a couple of weeks when she seemed to settle in. I must say I miss the lunch. Their food is really good!!!
Brought my wife home from the hospital this afternoon after almost 2 weeks in hospital. She did very well, walked without trouble, ate a good dinner, went to bed without any argument (only I still couldn't get her to brush her teeth). I discussed with a woman who has cared for her what additional help I need. At the moment we will try having her come in the morning, get DW up and dressed. Then after breakfast I will drive DW to day care while the helper does the dishes, makes the bed, does laundry, etc. I don't know how it will work, but we will find out on Friday. I am supposed to have my own appointment with my PCP tomorrow, but with the major snow storm predicted, I will probably have to reschedule.
Marsh, I'm glad to hear that your wife is doing better and is home. I hope everything with the carer works out smoothly.
ElaineH, The first day I left my husband at day care I was a wreck. I didn't give him any notice that we were going. I just told him we were going out and since he likes to go anywhere he got in the car. It truly did feel like I was taking my child to preschool. I walked him in and the staff took him to show him where to hang his coat. I signed the sign-in sheet and left. I worried about him all day (4 hours) and kept waiting for a phone call that I had to come back and get him because he was upset, angry, etc. Of course, the phone call never came and he survived and so did I. All he really did was ask the staff when I was coming to pick him up. The staff would tell him 4:00, but I usually pick him up by 3:30 and he was always amazed I was early.
After he had gone a few times and seemed to like it, I then would go out to breakfast or lunch. Now he goes 3 days a week for 6 1/2 hours each day. I have my schedule of running my errands on Monday, visiting and going to lunch with my parents on Wednesdays, and Fridays are for me. On Fridays I will get my hair done, go to the library, nap or anything else I want to do that I can't do with him.
Lots of snow here, but it is melting. Whenever I hear the weather reports of snow warnings across the country, I think of you in your different states and know what's coming down on you from the skies. Lots of love to you all.
We are having white out conditions. Snowing like crazy. We never get what the forcasters predict due to being in the foothills of the White Mountains and the Lakes Region. We have almost a foot already and it just started snowing at 5 am. Enjoying watching it come down. Made a big batch of spaghetti sauce, meatballs, etc. House smells yummy. We will stay in, all warm and cozy till the storm is over, then I'll be out on my John Deere, clearing the driveway. There is something so nice about being snowed in. Yes, I love winter, lol. Stay well and warm. S*
Deb, Thanks for your comment. I’m praying that it goes that smoothly for me. My DH is still very social & I know that he will make friends there. If all goes as planned he will go there on Monday & Friday. Monday I will work & Friday will be my day. (I work on Wednesday & he stays with our daughter that day.) I’ll let you know how it went on Friday night
Elaine--I think I remember tearing up the first day I left him at daycare. I was happy he was going, but sad because it seemed to make the diagnosis more real. He attended 3 different programs for a total of 4 years; it wasn't perfect and he was "dismissed" from one of the programs, physically walked out of the centers at two of them; but overall, a good experience and I would recommend it. I had to take him out of daycare last November when (because of disease progression) he was no longer enjoying it. I would consider re-enrolling him in the future if things change and he can again tolerate it. Be sure to post any difficulties you may encounter because it is very likely I may have experienced them during the period of time my DH attended.
Well today was the big “go to day care day.” When we left the house he asked where we were going & I told him that we were going to the “senior center” we looked at last week. He said that he didn’t want to go. I knew that wasn’t a good sign. When we got there he got out of the car & slammed the door (another bad sign). We went in & the aids took him into the main room & tried to distract him while I went & filled out some paperwork. The admin lady told me not to worry, but I gave her my cell phone # just in case he wouldn’t cooperate. I drove away & went to a shopping center 5 minutes away & sat in the parking lot for 20 minutes (I cried the first 10 minutes). I was just getting ready to go on my errands when my phone rang. It was the lady at the center. She said that he just wouldn’t get involved with anything or talk to anyone. So I told her that I would be right there. He was so angry when I picked him up. He started arguing with me in the hallway & I told him that we would talk about it at home. He wanted to argue there, but I just told him that if he wanted to go home he better follow me & I walked out the door. So that set the mood for the rest of the day. I think the people at this center were a lot older & some were in wheel chairs. I know he wasn’t happy that I left him, but I think the fact is that he just isn’t ready to go to the day care center. Of course now I am suffering because of his mood. I had such high hopes that this would be the answer for his lack of social contact. Oh well on to Plan B (anyone know what Plan B is?)
I have just had a difficult situation, not with my wife. The man, a banker, who has been the treasurer of the Free Medical Clinic I work at was not paying bills, not even opening them. After having the phone and cable shut off for non-payment, the president of the board talked with him. He had no idea what the problem was. When we got the box of records it contained several un-opened bills, and also several checks from the bank he worked in that were supposed to go to clients of his, people with no connection to the clinic. He actions and response certainly made me consider the possibility of EOAD (he is 48 years old). I have just talked with his "significant other". She had not noticed anything except that he has ADHD. She is going to try to get him to his doctor. What do I suggest if he won't go?
Since the president of the board now knows the situation, isn't it his job to handle it, or get the info. to the person who can appoint a new treasurer? I don't know how it works between doctors, that is, the ethical dimension, but if the man doesn't go to his doctor, can your question of possible EOAD be brought to the attention of the man's doctor? It's something I've wondered about re. my husband's ex-wife: I know her family physician and have wondered if he should know about her recent bizarre behaviour, which might require treatment. Something tells me that I don't have that right, but I've wondered.
I'm sorry it didn't go well at day care. Your husband sounds like he is not as far along as my husband. My husband has been going to day care for almost a year now and he seems to like going. He doesn't do very many of the activities but they don't force them on him. His center has a floor to ceiling aviary in one corner with songbirds and when he first started going he would sit on the couch across from it and just watch them all day. There are people at his center who are in wheelchairs and a lot older but that doesn't bother him. He has always been comfortable with elderly people so maybe that helps.
My dh did not like day care at all at first, but they told me it sometimes takes a month for them to settle. It took even longer than that, but it was important for me so I persisted. Even now he sometimes protests when he realizes that we are walking toward the van in the morning (especially with certain drivers), but he goes with me, and gets in and they say he seems contented all day although he doesn't participate much. He has always formed an attachment to one of the aides and tries to stick with her all day, and they let him. That helps. If he protests about getting into the van I tell him that "Henny" is waiting for him. (I actually have no idea what days she works and it sometimes a different one, whoever greets him first in the morning.)
Thanks for the encouragement. I know now that he isn't ready (ie, far enough along as deb said.) I posted this on facebook: Today God answered my prayer & the answer was , "Not Now." (please forgive the religious reference). So now I will just carry on until he IS ready. One thing marilyninMD posted on another thread (and I quote) . 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. I think I need that to be my mantra at this point in time.
Elaine - I feel for you. I KNOW I couldn't even get my husband into the car to go to daycare! Day care right now just isn't a consideration. For me, it would not be worth it to fight with him getting him ready in the morning (first of all, if he doesn't want to do something, he doesn't do it). But, for the most part, if I do what I'm supposed to do, and that is keeping him calm and not arguing with him, "turning the other cheek," so to speak, things go along pretty well. He even has been helping me pack away the Christmas decorations! He forgets some of the things I tell him and wanders away to do other things, but if I get him on track again, he continues with it. Mine isn't far enough along either to attempt day care, etc., although when I look back at some of the things I've been writing in my journal, I ask myself if I'm being delusional.
Elaine--I am sorry the daycare didn't work out. The ONLY reason my husband attended for 4 years was because he thought he was a volunteer, working there. He thought he was being paid by his insurance company to go (weird, I know). I used to leave the check stub on the kitchen counter from his LTC insurance company that reimbursed me as proof and a reminder that he was "earning" money. A few years back, someone here posted that she gave the daycare extra money, which they gave back in the form of a check as her husband's "paycheck". My husband always did community service, so I also tapped into that and emphasized that he was helping people. The daycare would actually let him help other clients (when he was in the early stage) and he had group of little old ladies he always ate lunch with and looked after. It wasn't perfect, but it did keep him attending. Maybe later on you can think of a "cover story".
I thought about the volunteer or paid help idea (which you had mentioned before) but I just didn’t think it would work either. He was so hateful to me & angry all day yesterday. Then last night he kept insisting that he wanted to go home. He took a bunch of shirts out of his closet so that I wouldn’t steal them. I told him that he could go wherever he wanted tomorrow. He also wanted to go to the neighbor’s house because he was convinced he would help him. He finally went to bed. I waited a while & then went to bed. He woke up in the middle of the night to go to the bathroom; of course I woke up too. He started crying & saying that he was so sorry that he treated me so bad. He told me that I didn’t deserve to be treated like that. Usually it takes me a while to get out of the bad mood, but it just broke my heart to see him that way. So he got back in bed & I just cuddled up to him & told him that it was OK. Today was a good day. He seemed to be on his best behavior. Unfortunately who knows what tomorrow will bring?
Interesting, my husband apologizes too after behaving badly. He never remembers what he did that was wrong, but just feels he needs to apologize. Sometimes he even does it when things have been fine (I guess his brain is misfiring and he figures--what the heck--I'll just apologize "in case")! It is heartbreaking, because during those moments when they are sweet and saying they're sorry, it is even more evident that the bad times happen when the disease has them in it's grip.
I have not posted in awhile, been soooooo busy. DH has to have 5 teeth pulled and 2 more filled. I am glad we are able to get this done while he is in good shape to follow the directions. DD is staying with us while she finds a place. She is the one who left her husband and I guess the boys as they are not with her. She just joined the army and is stationed up the street. I need to get her out of the house soon. I don't want to be enabling her. Things are just to easy right now for her. I want to help, but not help to much. You know what I mean. DS got kicked out of the house he was living in (They had been living with a friend) him and his wife and 3 kids. They are staying with his MIL. Good times. I said, both of my older kids are homeless! I am at a point where I need some help and here they are needing my help. Well I can only do so much and then they are on their own again! I know my step son is living with his mother along with has 2 girls. Is it only me or is it this generation. I just don't get it. And all of this is of their own doing. Could have been avoided by all.
Blue, it's not just you, it's this generation. I have the same sort of problems with two of my children (and they're in their 50's). Yes, you're right, it could have been avoided. There seems to be a lack of looking ahead, to see cause and effect. You seem to me to be very clear-sighted in not wanting to enable your daughter; it's very hard I know, but it's best for her. I've learned this by going to a stress counsellor re. DH's ex-wife and their children, and this was just another stressor. We have a lot on our plate, and we don't need to pick up other's problems, too.