Where did my friends go?

Kenzie56

I haven't seen this topic addressed recently, and I am sure it has...but I have missed it. It seems I am not included in neighborhood get-togethers and other social events any longer. My DH is 70 and in moderate to late stage mixed dementia. Over the past two years (when he has had more difficulty communicating) I have felt so lonely. I care for DH at home, but feel my friends and neighbors feel so uncomfortable around DH that no invites come my way anymore. His friends call and every now and then want to get together with him for lunch (of course I have to drive him an hour or more to meet half way) and then feel I "translate" during the meal, when he gets stuck. It's exhausting and I feel frustrated that I go the extra mile for his friends just so he keeps connections, but I can't with my friends. I've asked his friends to come to our house to visit and then I can go out, but they want me with him in case he has issues. I haven't found a way yet to have someone sit with him while I meet a friend for lunch. He doesn't want any strangers in the house and won't agree to go to day care...so I am with him all the time without a break. I've invited a few friends to come over for dinner, but they politely decline. If I talk with my neighbors outside, he looks out the window and then comes out thinking we are talking about him. I really feel trapped. Anyone else in this situation?

Joe C.

Kenzie, I can certainly relate to your predicament. I have a couple of very close friends that still visit and extend invites on occasion but not as often as in the past. I am fortunate that I have a caregiver weekdays which allows me to get out on my own. DW originally did not want strangers in the house but 4 years ago when I needed some surgery I told her the doctor wanted someone to come in the help me recover, she’s been with us 4 years now.

DrinaJGB

Over the years we have seen friends disappear. I have come to feel that the reason for this is simple---they stay away because it is too much of a reminder that it could happen to them.

Ed1937

Drina, I think that has a lot to do with it. That and the fact that they are uncomfortable, especially when the PWD tries to join in a discussion, but just can't find the words.

White Crane

Dear Kenzie, I feel your pain.  Only one couple out of all our friends invites us over to play cards every few weeks.  They do it because their brother in law had Alzheimer's and they understand.  The rest don't.  Another couple offer to help by doing minor repairs around the house and one who brings groceries when we only need a few things.  One couple brings lunch over every once in a while.  I am so very grateful to those who help in some way.  The connection seems to be that those who help have had loved ones with dementia and know how hard it is. 

At times I am so lonely it hurts.  And at times I feel trapped.  I'm sorry it's so hard for you right now.

markus8174

Kenzie

You describe a huge problem for all the hosueholds that include a PWD. As a nurse we were taught the toll a cancer or other life ending disease has on a family in terms of social isolation. Having lived it for the last 8+ years I feel Alzheimer's (or other dementias) has a poorer track record than cancer in this regard. Even my DW's children and step-mother have abandoned her. As her disease progressed, and now since she is in long term care, we saw less and less of the family. Both of us had most of our friendships through work so when we retired those connections vanished. I find, now that my DW is solidly in stage 6, it has progressed from just avoiding her "She just isn't mom anymore and it makes me too sad to see her like this" to actually discouraging my spending time visiting her,  " Why do you keep driving up there, she won't know the difference!".  My DW is still verbal, on a good day she will joke and laugh with me and the staff, she knows who I am, askes why her kids never see us anymore; that last one  breaks her and my heart. I know the day is coming when my beloved wife will be cured of her dementia by the The Great Physician. When that happens I hope to move far, far away from the people I once loved. Starting over with a clean slate seems better to me than trying to forgive and forget our family's selfish cruelty and the pain they caused my DW when she was begging to just see them.

Rescue mom

Yes, it’s a very sad, and widespread, problem. Almost all our friends vanished. A few told me flat out they just couldn’t stand to see him like this, he can’t make conversation and may act strangely. A couple of friends’ wives said what somebody else said—he scares people because they think this might happen to them. 

He usually gets agitated in groups of more than 2-3, even family or old friends. I think he’s frustrated because he can’t follow normal conversation, but the end result is he is visibly upset so people don’t visit much.

A couple took him out to lunch a couple of times (one time each). No repeats. One told me later he (the friend) just couldn’t “handle it” and didn’t realize “how hard” it would be to order or just talk. “I don’t know how you do it,” he said. They sure didn’t, a second time.

My own friends have been better about getting me out, but we don’t have much in common anymore since they are traveling and living a normal life, and I am not doing much beyond being a caregiver, not the most fun conversation. But at least they get me out and I try not to discuss caregiving much unless they ask.

I am so grateful for the few who do still drop by the house for  a few minutes. DH does still seem to enjoy that, if it’s not a long stay. But it’s absence of the day-to-day “small talk” with DH—what we did, what we’re planning, about the family or the yard, or the dumb news story, etc., .—that’s so common most couples don’t even think about, until they can’t have it. That’s the loneliness so many write about here.

harshedbuzz

It's hard.

I saw this a bit with my mom and I feel as if, in her case, there was "blame" on both sides.

A few of her friends drifted as they had been "couple friends" and with dad not just impaired but unpleasant, they were unceremoniously dropped. 

She had a couple of girlfriends who were real friends, but it was almost like she failed at the old kindergarten rule of "You have to be a friend to have a friend". She was often too exhausted to reach out, she was often unwilling to pay the $100 for dad's care to meet someone for lunch and while she was starved for adult conversation hearing about their trips and successful grandchildren brought out a bitterness that was off-putting. Plus, a number of her friends were going through "stuff" of their own; a couple were widowed and a few were dealing with their own health issues. 

My mother and father didn't want to hire help either, but if you can't get him to a day program, that is the only answer IMO. We brought help in when mom had her knee replaced and made it about her needs. It took a while to get a good fit, but over time the HHA became someone dad looked forward to seeing. She was young and kind of resembled my mom as a young woman. 

Mom didn't use the HHA as often as she maybe should have because of cost and a need to budget for an unknown period of time. She felt she'd be able to go back to an independence and more social interaction once he passed. But not long after he did she had a health crisis that impaired her vision and took away her ability to drive so her planned Stage 8 didn't play out as she'd hoped. 

HB

Pathfinder52

Kenzie56 --

Indeed, where have all the friends gone?
My DH was a man who tended to befriend people (men) much older than himself so, as he aged into his 80s and got his diagnosis, his friends were hitting their mid-90s and certainly weren't available to visit him.

Watching this predicament, I vowed in my early 60s to commit to building friendships with people (mostly women) in every decade of life.  COVID put us all in isolation but I am pleased to report that now, at 69, I have women-friends in their 20s, 30s, 40s and 50s and they regularly call or Zoom with me as many no longer live here, in the mid-west.

Hoping you'll build some new friendships.

And, don't give up on daycare (it has been a godsend for us) -- sure, you haven't convinced him to go yet, but maybe it will become less about his CHOICE and more about your self-care needs!  I take hubby to daycare 2 days each week and those days are the JOY of my week -- I can do anything I want for 6 hours at a stretch!  Glorious!

Wishing you success(es) along the journey.

--p

Paris20

My husband still gets an occasional phone call from old friends but the days of his going out to a restaurant are done. My cleaning lady took him out to a florist to buy me flowers for our anniversary yesterday and he returned with a giant wet spot on his pants, and he was wearing his super Depend pads. I’d be terrified to let him go off to the Men’s room, anywhere, for fear he’d get lost. There would have to be another man to supervise. At that point it becomes an ordeal as far as I’m concerned. My daughter wants to go to our favorite restaurant for Thanksgiving, but I think I may go back to the old fashioned home-cooked meal. I expect no invitations from friends or neighbors. They just cannot deal with AD.

Michael Ellenbogen

I like to think they were never true friends as we so the same issues.

Rescue mom

Michael, somebody here once said these were “transactional friends,” people who were friends only as long as the PWD was fun or interesting to be around. Once he’s not fun or interesting—contributing something— they’re gone. 

I kind of get the point, OTOH how many of us have friends we don’t enjoy being around? OTOH being sick is a different matter. Don’t we want to help our friends? But rarely is that “help” going to last forever….I could debate this from all sides. I don’t know if “transactional” is a definition of friends? Or a subset?

(Also, my friends are here for *me*, as long as it’s just me.  But DH friends, and dealing with him directly, is a different thing)

Iris L.

The modern definition of "friend" is someone to socialize with.  Once we can no longer socialize, the "friend" disappears.  The old-fashioned idea of someone to share our burdens with seems to be passé.  I found this out myself.

Iris