My dh went to lunch with 3 friends two months ago and the guys never told me what happened. This week dh received invite to bi-annual luncheon next week with 3 friends plus 30 other retired co-workers. DH said yes, he would like to attend so I e-mailed his acceptance. One of the original 3 e-mailed back offering to pick him up because they know of his AD and he doesn't drive. This fellow says when they went to lunch my dh got very surly when he was told he was over-paying his bill by way too much and offered to assist. Why didn't they tell me? I would never have okayed his going to big luncheon next week.
Anyway, dh will go but it is the last time. I told them not to send any more invitations. i can't trust dh to be nice when I am not around. I made arrangement whereby dh will give money to his friend who is picking him up (just so to make things easier when bill comes to the table for all those guys). I know when he says goodbye to all his old friends, it will be the last goodbye while he is alive and my tears just flow when I think about it.
My dh was always the most quiet, easy-going guy around. Would never say a thing to hurt someone's feelings. Tonight he lashed out at me for no good reason. I told him to be nice and not yell, the neighbors might hear. He listened to me tonight but I am afraid next time he might not.
I read what all of you write and you really are terrific examples for us beginners. You have so much patience and I hope and pray that I can follow in your footsteps.
O Shirley, your post reminds me of the time my dh and I were eating out at one of our regular places and we chatted with the waitress and I told dh to give her a good tip because she was a classmate of our daughter's; she was working hard....going to school while raising her baby. When I got home I looked at the tab and he had tipped $50 on a $15 ticket. When I asked him how much he had tipped he said, oh he tipped 30% because I said so. Haha anyway I'm not all that good with percentages but I always pay the tab now and chalked that up to live and learn. At least the tip went to a good young woman!
shirley - yes there are many, many more sad days ahead. But, we try to cover them with thinking of the things they still can do. Often that is not easy because we hurt for what they/we have lost. And many days where our patience does not hold out and we loose it. We think pick ourselves up and go again.
shirley--I see 2 issues: First, I would reconsider discontinuing the lunches with your husband's friends. It is great that he gets invited and that a friend is willing to take him. If he enjoys going, can YOU discreetly give the money/credit card to the person who picks him up? There has to be a way to remove your husband from the bill paying process. My husband has been going out with friends for 6 years since his diagnosis, and this is the way I handle it. If that won't work, perhaps the friend could lay out the money for his food and you can reimburse the friend afterwards. When my husband and I go out alone, he often wants to pay and I say "You'll get it next time." He is satified with that and forgets. It's a dignity issue, I think--especially being the male who always picked up the check. In the early stage, people w/dementia are very sensitive to being treated like a child.
Second, if he is having angry outbursts--with friends or with you--he should be on medication to address that. If he already is, it's apparently not working.
I agree with Marilynn. I wouldn't jump the gun on prohibiting his get togethers. The friends know what happened last time - and they still invited him this time. When it gets too bad - they will stop inviting him. Or your husband will get to the point where he doesn't want to go. My husband tried that last night with his monthly poker game - but I talked him into going with one of my adult sons to accompany him. I told him it is important for him to socialize - I've read articles that say that.
The time will come when he (and you) are no longer invited into social circles - I wouldn't make it happen sooner than necessary.
I agree with everyone. Don't stop allowing him to go out with friends. There are several ways to handle the money situation that won't embarrass him. His friends will learn how to deal with him so as long as they are willing you should let him go. Believe me, you will welcome the quiet time!
That reminds me of 2 instances that put an end to my DH paying the bills. One was an $80 tip he left on a $150 bill and another was a $40 tip for lunch!! I am sure that there are other times that I didn't catch. Daddy Warbucks!
Charlotte: Every day is a realization of how much dh has lost. I tell my kids I can't begin to list everything because dh is very cagey and hides his lost memories. I know what you all feel; so many years of building a marriage just to see it all gone. Maybe I wasn't meant to share retirement years with a dh. I have become a familiar face that he wants near him much like a mother and child. If a leave the room for more than 20 minutes, he comes looking for me. He doesn't read or concentrate on tv. No comprehension. Bills look like money coming into the house. Doesn't really know how we get our money. Every once in a while I explain it to him but it isn't retained.
MarilyninMD===I have notified dh's friends that they aren't to send any more invitations for events. DH can't handle them anymore. This is the last one and I know it will be the last goodbyes while dh is alive. How morbid but we all live with this fact every day. If my mother were alive, she would say all of us caregivers are being tested and building our characters. What the hell for? I will have no energy left to come back in the next life, if there is one.
Shirley, don’t kid yourself, I’d like to think we all have patience, but truth be told my patience wears thin more times than I care to admit. My DH sounds just like yours, but in addition to what you said, mine wakes up confused EVERY morning. He doesn’t know where he is & he always says, “Elaine is that you?” Sometimes he will tell me that he just wants to go home. He also is becoming more dependent on ME. We have a friend, who comes & takes him to lunch about once a week & he seemed to enjoy that, but she has been on vacation for a few weeks & when I mentioned her name to him he didn’t seem very receptive. I’m afraid that when she gets back he won’t want to go with her & then I won’t have that few hours of respite. I can see his decline almost on a weekly basis.
Shirley: What we did when my husband couldn't go out anymore for lunch is invite his friends over to the house. His friends---usually 2-3 seemed to be the perfect #-- would email a few days in advance, and they would always offer to bring pizza or sandwiches. We would supply the drinks. This went on for @ 2 years, and not only did my husband seem to enjoy it, the caregivers (because I was working at the time) got to meet my husband's former co-workers, clients, etc. which allowed them to see him as much more than just a person with dementia. My husband always ate @ exactly 12 noon every day, which made planning this perfect. I even had a "pizza party" for his birthday last spring and invited @ 25 people over who had been loyal lunch buddies for about 2 years running. I am so glad I did because a few months later my husband declined so much he lost his routine, and then would be upset by visitors, so no more lunches. Please consider this idea---his friends really wanted to do something for him, so they also felt like they were "helping" which is so difficult to do in this situation. Good luck!
Yes, if his friends are still calling to include him, let him go and work out a way with the friends on how to pay for the meal. My DH can still pay but guess what? his friends are far more scarce now...makes me sick.
Shirley--I think texasmom's suggestion is a good one if you don't want your husband to attend outside events. You will benefit along with your husband if he remains in touch with his friends--it could be a source of respite time for you. Also, it might help you to attend a support group--perhaps one of his friends could come stay with him so you can? Dementia caregiving can last many, many years and we should all take advantage of any help/respite we can get! I think most of us have the opposite problem, too few offers.
We had similar situations, but time has handled it naturally. His best friend took him out for a weekly lunch, but the time came when G couldn't walk safely even with a walker. His friend now comes to the house weekly for "ice tea and a chat". I can see this going on for some time, but under a controlled atmosphere which is a neccesity now.
Mimi, My DH friends are also scarce,however,mine are too.Is this what is to be expected? I feel so bad about it. DH is harder to get along with each day.This disease is harder than anything We've ever had to deal with.
I absolutely agree with Texasmom. Please do not take socialization away from him too soon. Invite one or two of his friends over for a luncheon every couple of weeks. Or let him go out to eat with one or two good friends on a regular basis. A group might be too much for him. Everyone’s suggestions about handling the bill are good ones. There are creative ways to handle most situations. But denying him the opportunity for socialization will hasten his decline.
As for his lashing out – Trying to tell him to be nice, or discussing his behavior with him is completely useless. His brain is damaged. His reasoning button is broken. One of the most difficult things for spouses to learn is that you cannot talk to them as you used to, and more important, you cannot expect them to respond as they used to. You will save yourself months and years of stress if you learn that sooner rather than later. I speak from stress laden experience. If he continues to lash out in anger, I would strongly advise documenting the incidents, taking the documentation to the doctor, and discuss medication. I would be in a padded cell now if Sid had not gotten on medication to control his rages, which were all directed at me.
Ann, yes any friends I had are out of range now too but for 2 and both of them work...one is a dentist and the other owns a jewelery store...guess where I go for a break..yep to the jewelery store when I am on my rounds or errands I pop in and if it is not busy we chat for a bit..we are both active in our hospital ministry and Bible study group so there is that little bit but not much else..Even friends far away who know about this don't call and hardly email..they just don't want to hear about our "dull" world full of heartbreak and loss..
Joan I agree about the lashing out...my DH does not do that but the problem is comprehension of what I am telling him. I see this as a bit more of a change. I seem to have to now talk much slower and remind myself not to talk about anything too complicated..like the warranty on the washing machine or the freezer that went down on Friday the 13th!!! I have had 2 mad as a hatter days here with all of this.
And as a result of all of this, I am finding it harder and harder to find joy in much of anything any more.
My DH's lunch dates every week mean the world to him. I send him with a twenty dollar bill each time which he hands to the individual holding the check and the change is returned to him - no bookkeeping for DH. The men are kind and inclusive and e-mail me with the next week's venue. Shirley, I hope that you can find a workable solution.
I don't think I made myself too clear. I only decided that dh should not receive luncheon invitations because of the way some of his friends are perceiving him. Now they all know that dh has AD but they know nothing of the disease and the deficiencies dh has. "When the sun comes out, dh's attitude will improve," so they say. DH has not had rages as such so I really don't want to put him on meds just yet. I know I may have to in the future. His friends are the ones who complained to me about his demeanor affecting his friends. I am waiting for one of them to have AD so they can see what it is all about. These luncheons occur just a couple of times a year so dh doesn't even remember about them. One guy told me he would be happy to pick up Tom for anything and that I wouldn't be able to caregive on my own. Well, guess what. I never heard from him again.
I have had several of them to the house and everyone has a good time but we never hear from these people again. DH and I have lost all our good friends due to death. I just have one dear sister left. DH has no family and our three sons are all out of state. Two daughters in our state but they have full time jobs. If I really needed the girls, they would pitch in gladly. That day may come.
I thought I had a good thing going with these luncheons but apparently the guys don't know how to socialize with dh, no memories and they do a lot of reminiscing.
shirley, I also had a friend tell me he wanted to set up a schedule to help me……….. & then I never heard from him again! PLEASE don’t tell me you want to help me & then cop out. I really appreciate any help I get. Our Pastor takes DH out to lunch once a month so I can go to the Ladies Bible Study. I agree that if your DH’s “friends” can’t handle the changes he is going through then maybe it’s best that he doesn’t go with them. I’m sure that is why my DH doesn’t get any invites to hang out with the guys. Unfortunately because he isn’t around many other people he is getting very attached to me. He has to know where I am all the time. It’s been almost 6 months since I was able to leave him at home by himself. Vent away……… we all do!
My husband had friends who tried to continue the "good times" and would take him places....golfing, movies, lunch but it got to be too much for them to handle. How could I fault them for not wanting to deal with it? I didn't want to deal with it either. I remember them bringing him home and the other guys were teary eyed telling me about being on the golf course with him. I thanked them for everything and sure didn't expect them to do more. This disease is isolating.....it is the nature of the beast.
shirley - would a day care or senior center once a week give him social contact that may be important to them? I know since being on the road again, the visiting with the other RV'ers has done wonders for him. Everyone seems to be nice (have not heard any complaints) and fortunately they are gone in a day or two, so his repeating doesn't get old. He did go over and have a chat with the manager the other day. I knew he would joke about Art's memory loss but not as much as I guess he really was doing. Art told him how he was feeling about all the 'reminder' so what he was forgetting. Whether is will change the managers attitude towards him I do not know - time will tell. The guy is only 44 so I was surprised at how welcoming he was to Art to begin with.
I have asked dh many times if he would like to take an art class or whatever else would interest him at the community center but he absolutely refuses. He was always a shy type so he never cared for a lot of socializing. His home was everything to him and still is. Likes to go shopping which we do but he won't travel anywhere now. He is too good to be sent to day care. I can still leave him for 3 or 4 hours which is a respite for me. He hasn't gotten to the constant repeating yet. Has a very hard time communicating...very limited vocabulary. Just one big shy kid who doesn't like new stuff or people. If I leave the room for 20 min., he comes looking for me.
Dr. still hasn't given a definitive diagnosis but he did say he would sign anything I brought him.
In 2004, dh became extremely anemic, hospitalized and given 4 units of blood. No bleeding anywhere after numerous tests. Hematologist said the protein levels in blood had to be watched because he had the syndrome for multiple myeloma. Took iron for 5 years and that kept his hemoglobin at an accepted level. Saw the hematologist last week and he is starting to get anemic again. There is a strong possibility that multiple myeloma may be getting serious. DH is 85 and with exception of AD, he is quite healthy. My son is also a hematologist and has advised me not to let his father go through any chemo because of his age, AD and the sickness involved. We will cross that bridge when we get to it but another dilemma lurks. We will know more at next appointment in June.
Shirley, I tend to agree with your son about not putting your husband thru chemo. He will probably feel better than if he had the chemo. Just love him and let the rest take care of itself. I know this sounds harsh, but I mean well. Hope you understand. I will be praying for both you and your husband for better health and peace of mind about whatever you choose to do.
Today a life long friend sent me a picture of DH and myself at their 69th wedding anniversary party they had a year ago. We see them about once a week. He looked at it a long time then said I didn't recognize these people at first because it's been a long time since i've seen a picture of my father....I'm crying.
so sorry ro. these are the times that really hurt. when my DH would go to bed at night a couple years ago (seems a lifetime and was still walking ok) we would stop at the long hall mirror and he would always salute the guy in the mirror. he had no idea it was himself. while very difficult the first times, it became ok after a while, and we smiled and laughed with the guy in the mirror. it made the loss easier to handle.. divvi
Thanks for the advice. No you aren't being harsh. At 85, I don't think it is necessary to put someone through chemo to prolong life for maybe 3 months. If dh were in his right mind, I know he would refuse it also.
We see the hematologist Tuesday. There are days when dh won't take his iron pills. He eats very little meat, has a real aversion to it in the last year. If his hemoglobin numbers aren't better, dr. may order a bone marrow test. Dr. mentioned another colonoscopy and endoscopy. I will even try to talk the dr. out of that and to just watch him periodically. He doesn't have the symptoms of severe anemia like he did 7 yrs. ago. At that time, he was out of breath and ready to go into congestive heart failure. All his numbers were off the wall. I just don't want dh to have any more anesthetic than absolutely necessary.