Why friends and family withdraw

Jeff86

Many of us have experienced that some friends and familiars drop out of our orbit, pretty early on in the AD journey.  

This Christmas, we heard from one of my DW’s closest friends, after an absence of over four years.  Unsolicited, she offered an explanation of why she has been absent.  She said how unhappy she was at seeing my DW’s decline and, knowing how it was going to progress, she couldn’t face her emotional reactions to ongoing interaction with DW.

I can appreciate that.  We spouse/partner caregivers have such deep grief, and we need to appreciate that dear friends and family are also profoundly affected by our LO’s dx and disease progression.  At the same time, we don’t have the choice (and wouldn’t so choose, anyway) to walk away from our spouse/partner at his or her hour of greatest need.

Earlier on in our AD journey, I was bothered by those friends and family members who drifted away.  But I came to accept that, for one reason or another, it was too difficult, too sad, too threatening, for some people, and learned to focus my energy—and gratitude—on those who could and would stay on the journey with us.

Joydean

Jeff thank you for sharing. Over the years the friends that I really thought would I could count on, the ones that we had been through so much together over the years, they were the very ones that disappeared first. Other friends, they were the ones that lasted for a while. As of today we have been on this journey for 22 years. There are no friends from the past still around.  But life goes on.

CStrope

How wonderful that she was able to "come clean" and express those feelings.  I was just discussing with a friend that I met through these message boards about the isolating feeling you get when all of your so called caring friends don't really care so much!  I was never the type to say to someone, "just give me a call anytime" and then not follow through to help.  I think it is just too difficult for so many people to put themselves in someone else's shoes because they don't want to truly know what they're going through.  As they always say....ignorance is bliss.

Ed1937

I agree that it is just too much for a lot of people. We didn't have many older friends anymore just before dementia hit. She did have a couple of friends that she would talk on the phone with every so often. They didn't run away even though it was hard to have a conversation with anymore. Most of our "friends" lately were friends of our kids, but they were like family to us. They also didn't run away. I guess we were just lucky.

M1

Good to hear from you Jeff. My partner's sister has had that same conversation with me, she just can't bear it.  I am not resentful so much as sad that this is such a lonely road. I'm feeling a need to decrease my isolation, but hard to initiate new activities when caring for her still dominates my life.

BillieCDD

Some of my old friends check in periodically, but they do not get it. I am thankful that they do check in, but if they ask me to go to lunch, and I can't think of anything I would like less right now. If I could do it, I would be a basket case wondering what DH was doing. They mean well, and I love them, but they are in a different world from mine, and I find it hard to give a polite answer. WHAT CAN I SAY TO THEM AND NOT HURT THEIR FEELINGS?

Mint

Billie this is just a thought, not being in your shoes I don’t know everything.  You are right your answer needs to be polite because they truly don’t understand and they probably worry about you and are trying to be kind and helpful.  

Could you just tell them I would love to go out with you guys and I miss that and appreciate you inviting me but I’m unable to leave DH alone.  Maybe explain in a few words as possible why you are unable to leave him alone.  They might come up with a solution for you, you never know.  If that doesn’t happen they are still aware of why you cannot and things are usually better when there is understanding of why you can’t right now.  

I have a similar issue with my mom’s siblings and can’t be real upfront and honest with them as family dynamics make me uncomfortable with doing so, so understand if you are uncomfortable with being up front with them.

Take care

Kibbee

My observation is that friends (and sometimes family) are better at providing support in a short term, acute situation.   I have a friend who took care of her husband in his final days.  He was at home, on hospice, for about 6 weeks before he passed.  Family and friends came everyday to help with hands-on care, bring or prepare food, clean house, do laundry, run errands and provide moral support.  It was a great comfort to my friend.

But it seems to me that while friends and family are inspired to step up and provide short term support in an acute and emotionally charged situation, it seems to be less common to have that level of support when the situation is longer term.  And caring for a person with dementia is certainly that, not acute but long and slow with an uncertain but generally far off and therefore not emotionally immediate end date. How long can friends and family stay”engaged” in the years-long slog of dementia care, as the needs and ups and downs of their own day-to-day lives unfold?

My friend who cared for her husband has often commented that providing that hands-on care for him was the hardest thing she ever had to do.  Acknowledging that she did this under pretty intense emotional stress, I often feel that I am doing the same type of care…(feeding, bathing, incontinence) just drawn out over a period of years, and without the blessing of daily on-site and hands-on help from family and friends.

ElaineD

Dear Jeff,

My DH and I live in a retirement community, in Independent Living.  Lately many of our new residents in IL are in the early stages of dementia. Some even have caretakers who bring them to the dining room and pick them up. 

My DH and I are very welcoming to those showing signs of dementia, but many of our residents are upset and even angry that they are here.  They didn't sign up for dinner conversation with 'those people'.  Some of them think 'those people' lower the tone of our community.  It is expensive to live here and everything should be rosy.

All new residents must have a doctor's note saying that they are capable of living independently.  So until there are problems, the management doesn't intervene, and then only consulting with the family.

People are frightened, repelled, angry, confused when encountering people with dementia.  It is human nature to reject what is seen as 'different'.  

Some of our residents walk with walker or have power chairs....and there are those who resent their presence!  Inclusion is not on everyone's agenda.

Fortunately we have an excellent, well trained professional staff, and everyone is treated with respect and care.  Not all residents are like them, however.

Mental and physical difficulties remind people of their own mortality I think.

I am now physically disabled (walker and power chair) and I know first hand the rejection I can sense.  

Such is life, and we cope as best we can.  And we are blessed to have a forum like this, with the wonderful people who support and share with us.

Love, Elaine