I know this topic has been discussed several times. Each time I read/respond I am hopeful that our "friends" and family will magically reappear and offer emotional support. Since DH's dx in 2008, no family stays in touch or even tries to contact him (2 brothers, 6 nieces/nephews, dozens of cousins) and all friends, some from college who ALWAYS stayed in touch do not. I feel like we are modern day lepers - no one wants to even stay in touch because they may get it. His best friend from college who has always been there for him can no longer bring himself to even email or call. Mind you, he hasn't even had to experience DH's repeated questions, etc. he's just afraid. And on New Year's Eve, DH called his brother to wish him a Happy New Year and he hung up the phone on him.
It sounds like there's something else going on between your DH and his brother, besides AD, for him to hang up on him. Were they always close? Did your DH do or say something abusive while in an AD rage? You say that "no one wants to stay in touch because they may get it". Have you asked his brothers and friends why they do not stay in touch? An open dialogue is always best, and if you can talk to these people, educate them a little about AD, maybe they will be more receptive to staying in touch.
Can you join an AD support group in your area? I find it so beneficial to bond with people who know what I am going through. It makes us feel less alone.
After I wrote this, I checked my e-mail, and our member Betsy Howe, who writes for the Alzheimer's Association, sent me a wonderful article she wrote about friends' abandonment. Look for it as part of tomorrow's blog.
Joang, you are so wonderful. DH and brother were ALWAYS close until we had a definite diagnosis of AD at first (at 58 in 2008) then FTD. DH never did anything abusive to his brother, but his brother advised I needed to call police when he was physically abusive to me. Brother is embarassed about his YOUNGER brother's diaggnosis and doesn't want any responsibility for him. He advised me that I should quit work and care for him 100%. He won't talk to me or anyone as to why he has abandoned him. I have talked to friends and family and have tried to educate them on AD and FTD (even sent the CNN article on FTD which acurrately summed up our experience) but no one has reached out to learn more. There is no EOAD/FTD support group in our area - the facilatator of the AD group said she didn't think it was appropropriate for me to attend yet since most members are dealing with advanced stages of AD and she thought that would be too upsetting. Joang, my experience is it's too close to home and people are afraid of their vunerability and they don' know what to say or how to react. Friemds and family are embarrassed if he asks the same question more than once. The same brother stayed with him for 2 days in 2008 while I was traveling on business and never told me DH had delusions and locked him out of the house when I came home. 2 days later DH tried to kill me and was arrested and spent 4 months in psych hospital. When I asked the brother if anything happened while I was away he wouldn't tell me until DH was admitted into psych hospital.
LFL - I think you used the correct word of why many abandon us: embarrassment. Parents are often embarrassed by their children's behavior but because they are just children it is easier to overlook. We are talking about adults that will repeat over and over, wet or poop their pants, and do other things that are not 'normal' for adults. I am guilty as the next person for avoiding being around people that are not 'normal'. Really no different than can appear when being around someone with any type of physical or mental handicap. It takes LOVE to get past the behaviors, love and getting over one self.
I guess it could be a very bad case of denial. I am in the same situation, I have a sister who is willing to help if I move to Houston. My stepson is 32 and is totally self absorbed. He is unwilling to help his mom. He will call once a month or so and will talk to me, but not her. In fact several of her friends do not call any more. I have told them that she is unable to use the internet and in not able to dial the phone. I have tried to tell them that she would love to hear from them, but it does not happen. I think that most, do not know what to say to her, they talk to me instead. I guess some people are not willing to have a relationship unless they get something out of it. I do not know the answer but I think most people would rather not have to deal with something that will bring them down. They want Mary Poppins.
we lost most of our friends to AD, they just stoped coming over or calling, had one couple that stuck by us, during his memorial service alot of them were there I wanted to jump up and yell where were you when he and I needed you, so you can leave now, but I have come to understand what they might have been feeling, afraid of not understanding him or not know how to handle AD, one lady came up to me and was shocked AD took your life, I just told her I think maybe she should read up on it, I believe her DH has Alz. or something on that nature, sure had the look.As for my family they were all there when I needed them, I thought I can do this by myself but they knew me better, it was a strain on our children to see there beloved dad like that and it hurt, so sometimes they would not come to visit but most of the time they were there for him and me, one of my daughters watched him when I went to get a hair cut, he wet himself she managed to change him, I just got a laugh and said see what I go through, all I can say is maybe we need to feel sorry for these people, someday they may need us and we will not turn away, we know to well how it feels. Gail
My step son had knee surgery a couple of months ago. My DW and I went to Austin and took care of him after the surgery for a week. He was willing to accept the help, and yet sees nothing wrong with is lack of support for his mom. I spent the week taking care of him and his mom. Some people do not get it.
I have been grateful in regards to family support, because I've learned (from here and elsewhere,) that it's not a blessing you take for granted. Jeff has a couple friends who take him out to lunch occasionally, as does his brother, and sister when she's in town. He spent a week with his sister in the Fall, and will be visiting his brother in Colorado for a week, next week. I will fly out with him, return after 2 days, and he'll stay 5 days more. Although both Jeff's parents are gone (Jeff is 62) my mom takes a great interest, and helps. We just lost my dad to "complications of Parkinson's" (head trauma, due to falls) this summer, so she'd been doing full-time caregiving herself, and seems happy to pitch in when she's with us. Our 4 kids, actually, help their dad with his coat and whatnot when they catch him struggling. I know, this is probably like one of those holiday newsletters that no one wants. But, I will say again: I know that such support is not always the norm, and I will always be grateful for it.
We saw DH's brother and one of his two living sisters on Thanksgiving after I invited us to his nephew's. They didn't invite us. His sister emailed me on December 11th and said she thought DH said he didn't have Alzheimer's. She asked if he really did. I referred her to the alz.org site for an explanation of symptoms and explicitly described his symptoms. I haven't heard from her since. No one asked us to come for Christmas dinner or even asked what we were doing. Also, neither of them even called. I've always felt close to his family, but no longer.
Our sons live far from here. One was here with his wife for three days in November. He didn't see anything wrong with his dad. The other is coming for four days next week. He's spending one full day with his father while I take my sister for all-day neuropsych testing. It'll be interesting to hear what he says.
Fortunately we have great friends who do invite us to do things with them and who offer to help. I'm going on the caregivers' cruise. DH doesn't need someone with him all the time, but I have people lined up to check on him, to take him where he needs to go, and to invite him to go places with them.
Our kids get that their Dad has AD. One daughter does come and get him, takes him to lunch. The boys show up, maybe once a month, just drop in for a short time. The grandchildren pre-teens to college age are good with him. I am really disappointed in our two who are college freshmen. They act like we are invisible, even when we are in the same room. These are kids we cared for from the time they were born. DH was an only child, so no relatives there. I have a big family and they are good with Bob, but are 500 miles away. I get lonely.
There are several themes that appear regularly on our posts regarding how family and friends react or fail to react to our loved ones AD. These seem to be fear, embarrassment and lack of knowledge. It has been my experience that, even those who supposedly know about this disease, sometimes do not. I find that people are particularly unaware of the struggle the AD patient goes through in overly stimulating circumstances. Friends often have difficulty getting that answering simple questions or speaking of current events is impossible. and so I try to let them know that DH's history is a good topic of conversation and that just being with friends that care about him makes him happy. My DH has a large family and there have been different reactions from one sister offering to have us move in with her and her husband, to one brother understanding that I may need a break and so he arranges time with DH, to one who barely speaks to us. I spend the time explaining to the best of my ability to those who I believe will make an effort to understand. Some people will choose not to 'get it' until one day they are forced to face it themselves. I treasure the friends and family who go the extra mile to keep both DH and I a part of their world.
There is a couple in our community who I just see in passing. When my husband was still at home they invited us to their home for dinner several times even though conversation was strained and repetitive. When I fell and broke my leg she brought soup. When I mentioned in passing that I was having a problem with husband's MC her husband showed up at my door with the proper form. They are both cold fish, opinionated and generally not liked by the community. Go figure--
If people want your opinion they will ask, I guess I am guilty of that too. Sounds like they are good people and from what you wrote they sound like not only to they talk the talk, they walk the walk.
Bluedaze, Sounds like, for as " cold" as these people seem on the outside, there is something kindly inside. It is amazing how sometimes someone we least expect will be there in a time of need.
I have read all the views expressed above and can certainly understand each situation. My aunt experienced this distressing loss of friends when her husband was diagnosed with AD. At that time, my husband and I would go down to LA to help as often as we could ( we are located on the Central Coast). My husband would take my uncle out to play golf there or here when we would bring them out for a new scene and he always made sure my uncle won the golf game. Now my DH has AD...and I am starting to see his friends be around or call less often. AS someone mentioned above they have tried to educate friends and family about AD and so have I. What I run into sometime is people will say " oh how awful. I know how this is. My neighbor or a person in our choir etc has it"..as if they have any real idea of what this disease is like for those with it and those in the caregiving role... go figure.
FRIENDS- - Friends come and go through life. Just the way it it and always will be. When we are single we have friends and when we are a couple with a loved one, the single friends drift away, when we have children our childless friends no longer have as much in common with us and drift away. When we become a widow or widower our married friends drift away worrying about us snatching their partner. When one of us has a dehabiliting illness - many friends prefer to keep to their "healthy" and amusing friends and we see them drifting from our lives. I use the term "friends" loosely here. Most people only have a couple REAL friends who have been with us for years. Don't dwell on the "friends" who no longer visit or help you. They are not going to change so you will have to change yourself. Create new friendships among others in similar situations as you are in. You can bury yourself by dwelling on lost friendships. When my dh died one of our long-time former employees and personal young friend never called or came to the Funeral Home. I was disappointed but understand he must have had personal issues. I am remembering he may have actually thought of us as second parents because we always had a good rapport. I haven't seen or talked with him for almost 2 years but this summer I intend to go to visit him at his place of business to see how he is doing. If nothing else my motto is "Kill them with Kindness".
Imohr, wise words that all of us need to remember. You have a knack for putting into words good advise. Thank you, for being a good friend and staying with us......
I think, now (in hindsight) that most people who drop out, or don't respond, do so because they don't know how, don't know what to say, or are afraid to face reality. It reflects more on them than on us, or our loved ones. Two days after the funeral, someone I would have considered a friend stopped me on the street and said, "I was somewhat taken aback when the last hymn played at the funeral was "When The Saints Go Marching in." I said, "I chose that because we had already been through the emotions of sadness, and I wanted the funeral to end it with the triumph of 'We're all in this together, marching to a better place.'" He said, "Well, my wife is French, and she said..." and then he quoted a French phrase that translated meant, "We have here a merry widow." I guess the relief I felt that DH was no longer choking to death - and that must have been reflected in my face - coupled with a joyous spiritual song was read by them that way. In defense, the man and his wife are about 84, and sometimes older people say outrageous things. To give him his due, I met him again in the neighbourhood yesterday and he said, "I think that what I said the other day upset you." "Yes,it did,"I said. "Well, I'm very sorry. It won't happen again."
I think you are so right mary75*. I have many people who love me and supported emotionally through my caregiving days but I have just as many who drifted away. I think, not because they didn't care, they just didn't know what to say or do. I don't know about either of us being a "merry widow" but I think we are widows who are glad our spouses suffering is over and we are content in the fact that we did all we could do in the best way we knew how.
Well said, ehamilton*. For all you who are still in the trenches, the peace that you will feel when the spouses suffering is over and you know that you did the best you could makes up for it all, and is i itself a blessing. I thought you might like to read this from my brother's e-mail that I got this morning: "The gathering and service were beautiful. Ceremonies are essential - they punctuate life's composition, making it comprehensible and revealing a love story."
This is one of the eulogies given at DH's funeral last Sunday: Eric Nicol Passes
Eric Nicol 1919-2011 Eric Nicol, one of Canada's greatest humourists and one of the few Canadian playwrights to have a work produced on Broadway, died Feb 2 at the age of 91. Nicol was best known for his daily column in the Vancouver Province, which he kept up from 1951 to 1986. He also wrote 40 books and won the Leacock Medal for Humour three times. He was the first recipient of the George Woodcock Lifetime Achievement Aawrd for British Columbia Literature. Following is the eulogy delivered at Nicol's funeral by the well-known sportswriter and humourist Jim Taylor, winner of this year's Bruce Hutchison Prize for Excellence in British Columbia Journalism :
Coming here from the church, I thought how amused Eric would have been that the start of the service coincided, almost to the minute, with the opening kickoff of the Super Bowl.
He would have had a line for that, delivered in his usual self-effacing, soft-spoken manner, and I would have put a smile on our faces, because that’s what Eric did. His humour wasn’t the knee-slapping, guffawing kind. With Eric, you had listen, and read all the words. He did what we all strive to do and he did it brilliantly: he made the words work.
I attended the Eric Nicol School of Journalism for two years. This would come as a great surprise to Eric, because there never was an Eric Nicol School of Journalism. He’d be surprised to hear that he taught classes there, and to learn that he gave me the final nudge into a writing career – 20 years before we met.
I was in Grade10 in Winnipeg. We had a teacher who would read to us if we got our work finished early, and the books he read from most were Sense and Nonsense and The Roving I, by this guy Eric Nicol who wrote a column in the Vancouver Province. And I found myself thinking how great it would be to be able to do that, to make people laugh and think and react. And I jumped into the journalism class.
Flash forward 20 years. By some fortuitous coincidence, Eric’s son, Chris, and my son, Chris wound up on the same soccer team, the mighty Nightingale Pharmacy. They were eight or nine. Every Saturday morning, Eric and I would lean against the schoolyard fence, watching our kids and occasionally shouting something profound like “Go, Nightingales, go!” – and I would go to school.
We’d talk about writing, about style, about the columns he’d written. He probably never knew class was in session, but it was. And one day he gave me a piece of advice I’ve never forgotten.
I’d just been given the front page sports column in the Vancouver Sun.
“How many you going to write?” Eric asked.
“Five a week,” I said.
“Good,” he said. “Two will be garbage. No one can write five good ones a week. But here’s the thing: it’s got to be the best garbage you’ve got in you.”
Eric, of course, was writing five a week in those days. I read them all, and now I looked for the two he might consider garbage. I never found them.
The word “great” is much over-used in the media. On the sports pages it’s beaten to death. But make no mistake, we are saying goodbye to one of the greats.
When media people pass, the cliché is that they’re up in a great press box in the sky. I don’t know about that. But if there is one, I can see Eric, amid the clatter of the typewriters and computers, sitting quietly in a corner with his pad of copy paper and his pencil – which is how he always wrote --- working on his next column, while all the others are looking over and saying:
I can feel your spirit all the way from over here. I am these last 3 days in a deep saddness which I have truly earned; but, I also know that however poorly I may feel or behave on a partictular day that the joy of life that I am blessed to have been given this time in this wonderous place is unassailable. It would have long ago ripped away along with all the other things that break off and fly away from the trials and tribulations of helping the only woman I ever truly loved through this long death.
With friends like so many things in life, many are called few are chosen. I believe you have given three of the main reasons. They want to but can't, it's so hard for them to speak, and they are afraid to face the reality of our situation or their own mortality. Moorsb said some time ago on another topic 'who would want to hang around our reality' (paraphrasing) and I agree that's valid. I'm not arrogant enough to think that if the situation were reversed I would be just as supportive as I am now that's it's happening to us.
Your peaceful spirit which comes through your post of today and yesterday are like a balm on my soul that I might make it to there as well. Not to disregard all the other thoughts and feelings that we also know - but to see that we can go through this journey and know that in the end it was a love story and that we are can still feel blessed to be here. Thank you. I need that right now.
I offer a piece of music from utube I found which I've been playing since I found it yesterday. It's a soothing new age piece that's called Deep Ocean Orchestra: