Adult Children

Biggles

We have 2 beautiful adult children 43 and 40. My DH has VD combined with very bad APHASIA. Our daughter lives near us so she is very familiar with the mental and physical decline but our son lives 1500kl away and is so involved with his work and family, our 2 young grandchildren. He doesn't have a lot of spare time for phone calls and anyway my DH can no longer hold a conversation. Our son has always been very attentive but the calls are getting less and less and the subject is never raised. I think he might be sadly ashamed that his dad has this horrible debilitating disease, His wife has a very high powered job as well and is surrounded by her family, non of whom have been touched with this particular disease. Do I just get-on-with-it or confront him or just sit and cry occasionally and feel bad? Oh thank goodness I can let out on this forum.

LindaLouise

I also have adult children, 44, 42, 40 and 34. All married and with kids - oldest two grands are 10 and the youngest just a few months old. Most live near but one lives out of state. All are grieving the loss of their dad from EO in their own way. One son visits him in MC once a week - our daughter maybe once a month and our youngest son has only gone twice in 6 months. Our out of state son has visited numerous times, taking the time to fly up for weekends. So - all different. I decided to just love them all a little extra and appreciate what they are able to do. The son who visits rarely is most attentive to me, and often has me to his home for dinner. My daughter was the one who stepped in when I was going downhill due to caregiver stress and no sleep, and helped me make the hardest choice to place my DH. I think grief and loss effects everyone differently; I want to make sure they know how important they are to me - I share bits of news about my DH and my visits with him ( I go almost every day and feel sad when I miss a day!) - I want them to know that he is still my beloved DH - so I keep them all informed, but don't press them to talk about it or visit. I believe that if their interactions with me make them feel loved, appreciated and cared for, they will overtime continue to talk to and share with me - and with time come to accept this terrible loss. My guess is that your son is not ashamed, but sad and grieving and not sure how to express/deal with the feelings he has around that. Not sure at all that I've got this figured out but am trying to let each process in their own way, but with as much extra love and care as I can send their way…

Carl46

Biggles, I guess you are going to do some crying and feeling bad, we all do. But with regard to your son, I think getting on with it is your best choice. When I was in his shoes (stressful job, working wife, two small children), I had no time to do anything I wanted to do until it was too late in evening to place a phone call, plus all I wanted to do was relax with a whiskey and a newspaper.

My mother had aphasia in the last couple of years of her life, and it was difficult to carry on conversations in which I did nearly all of the talking. I visited her at her NH on my way home from work, so there was opportunity for hand holding, hugs, sharing chocolates, and the like. I can't imagine how hard it would be by phone.

If I were you, I would not guilt my son. I would encourage him to visit and to call, and keep him apprised of what is going on in your life.

Ditto about letting it out on the forum. No matter how bad it is, someone here has walked that road too.

harshedbuzz

@Biggles

Speaking with my adult child hat on.

I can't say with certainty why your son seems to be drifting away.

It's interesting your mind went to ashamed. Ashamed never really came to mind for me. And my dad's mixed dementia diagnosis included an alcohol-related one that caused his neurologist to judge mom and myself and prevented dad's admission to mom's first choice MCF.

Your husband's presentation with aphasia makes it impossible for your husband to keep up his end of a conversation in person. Imagine the difficulty over the phone given that the majority of communication is non-verbal which isn't possible over the phone. Your son's options would be a sad and awkward silence, monologuing or the pain and frustration of word salad. My dad didn't have aphasia, but before my parents moved back to this area phone conversations with him were really challenging— dad wasn't sure who I was, he would repeat scripted cringey stories, and sometimes just walk off mid-call.

This could be a situation where your DS doesn't feel like your DH "is still in there" if his interactions are mostly over the phone. A lot of children process personhood of a parent with dementia differently than the spouse of that same PWD would. My dad's personality remained very intact (we never got along), so I didn't personally experience this, but a dear friend whose mom had dementia did. My friend took wonderful care of her mom at home until the end. Her mom had been a dynamo and as she progressed into someone very not like that, my friend felt as though her mom was gone. She once told me "the lady who lives with me is a nice enough little old lady, but she's not my mom".

Your son may, on some level, be concerned for his own future with dementia and worried about the impact it would have on his wife and children. The same way I worry about being cursed with mom's arthritic knees and AMD, I worry about dementia— the pain it would cause my family and the logistics of care as my husband is older and my son is barely able to adult consistently.

The other piece is that your DH's dementia comes in a decade when your son is justifiably distracted by responsibilities that can't be deferred— his marriage, his children, his career and their future. I was in my 50s when I first noticed signs of dementia and nearly 60 by the time he was diagnosed. Traveling to see my parents wasn't easy before that— they were a 4-hour drive or 3-hour flight away depending on the time of year. My travel meant DH had to be not traveling for work and available to assume solo parenting for our son who is on spectrum.

I am sorry you are disappointed by your son's behavior, but I don't think confrontation is the best approach. If he does come to visit, and you already enjoy a warm and open relationship, ask how he's feeling.

He's processing losses, too. His reality was not what he imagined in terms of his dad. He may have imagined his father as a warm and loving grandfather to his kids or as someone he could share his work successes with. Just as it stings to hear about your friends trying new restaurants and planning their next cruise, you son is watching his kids bereft of the warm relationship other kids have with their grandparents.

HB

JDancer

My husband's sister and her adult children live one hour away. We've had one visit in the last 2 years and no other direct contact with my spouse. It's just one more loss brought on by this terrible disease.

BPS

I have adult children to and they all react different. My oldest daughter is 47 years old and I thought was the most caring, but during covid I was caring for my wife and my mother and we also have an special needs daughter that is 38 now. My son in law and daughter called and asked what they could do to help because they only live about 3 miles away. I told them that all I really needed at the time was for them to not let my wife feel isolated and abandoned. Even with all the covid concern they could call and let her know she was still cared about (at that time she could still carry on a conversation. They called once and that was it. My son that has 6 kids and a business to run call regularly and visited every week. Every reacts different but I do have a little resentment about my daughter since they call and asked what they could do then did nothing.

Quilting brings calm

He might not see the point of calling his dad once his dad can’t carry on a phone conversation. He might feel that the time of day he can call you isn’t a good time to call. He might think asking about his dad is hard for you. He might be getting info from his sister.

In addition, he’s of an age where texting is preferred. Try short texts with him to stay in contact.

fmb

I quit calling my father when my calls became confusing and frustrating for him. He thought I was his twin sister and would get upset when I didn't know things that she would know. I did stay in touch with my mother and called her frequently to see how they both were doing.

trottingalong

Our adult children don’t call their father any more and he can still carry on a conversation. He just doesn’t seem inclined to. When they were calling he would just get up and walk away from the call. I often text them as a means of connection since that’s easier for them. They both work, children are involved with sports and they are busy. I know they love their dad, but I don’t have any expectations of them and I don’t want to burden them either. I remember those busy years.

Biggles

https://alzconnected.org/discussion/comment/229275#Comment_229275

Thank you LindalLouise your children sound amazing and you sound amazing too. I think I shall emulate some of the ways you are dealing with this situation and gently let time run its course. I think you are right and our son is sad and so far away he is at a loss as to what to do. I just want to hug him and tell him it’s ok.

Biggles

https://alzconnected.org/discussion/comment/229326#Comment_229326

Hi trottingalong thank you for your reply i can relate so much to your situation. Our children don’t call their father any more we do sometimes have a speaker phone chat but not very often as it is very hard for my DH to make conversation these days and he also isn’t really interested or inclined he just gets up and walks away. I still send birthday gifts with love from Mum & Dad or from Grandma & Grandpa but this is starting to feel rather silly and not necessary anymore. Quite sad.