See you at the funeral… Cutting off relationships.

BPS

I understand that people don't know what say. They want to tell you about what they have been doing like life is normal but all we know and have is this disease. I went to store and delt with Alzheimer's, I did dishes and dealt with Alzheimer's. Not much of a conversation. No one wants to deal with Alzheimer's but some of us have to and it would be nice if others understood and supported but they never will. This is taking my wife and has taken almost every other relationship friend and family that mattered to me. I will start new when this is over if I can. I am fantasizing about a new life with new people in it that I don't know now because the old relationships will never be the same. I have one son and daughter in law that have stayed in touch and regularly visit and call. I know you shouldn't have favorite kids but he has been there when the other haven't. He has become my favorite. He shows he cares.

Timmyd

"I will start new when this is over if I can. I am fantasizing about a new life with new people in it that I don't know now"

This part I can really relate to. Tomorrow I am going to get my first set of invisalign trays. When people ask me why (in my circumstances) I care about having attractive teeth, I tell them: In my future, I hope there are people in my life who are important to me, but whom I have not yet met. I want to look my best when meeting them🙂

tboard

https://alzconnected.org/discussion/76824/see-you-at-the-funeral-cutting-off-relationships

You are not alone in this. I think I have one family member who is there for us. I honestly can not believe how the others are avoiding us. Most of my friends are keeping their distance. I don't need to cut off any relationships as they are mostly cut off already. As for a funeral I am not sure how I will handle that. I can't see having a funeral that no one will attend. I am considering a celebration of life event that involves eating and drinking. I am thankful that I have a few neighbors who are empathetic and seem to understand how hard this is for me and for my spouse. They are the people who ask me how I am doing and I feel comfortable asking them for help. I try to be a good neighbor myself and have done a lot of volunteer work in the community over the years.

Faye2020

https://alzconnected.org/discussion/76824/see-you-at-the-funeral-cutting-off-relationships

Well, I thought I was the only one feeling like this. I recently invited 25 friends to join us for a fun ‘memory making’ long weekend. All they had to do was pack their suitcases and drive to the Air B&B I rented for a few days. Plans included pampering, catered meals and even a comedian for fun.
I just wanted to make memories and enjoy seeing my spouse filled with laughter and joy while she can still benefit from this level of interacting.

It finally dawned on me that I was putting in so much effort and expense creating this event to only receive response from 4 of the 25 invited. Really, how hard can it be to respond to an RSVP deadline? So, after a day long cry I decided to cancel the event once and for all. My cancelation text was short, dry and vague. Who knew a little old cancellation notice would cause such a rumble?

My only regret is I wish I had read your post a few days earlier because my cancellation text certainly would have closed with ‘See you at the funeral….maybe’.

Feeling your pain.

Faye2020

White Crane

We've been on this Alzehimer's journey for a lot of years. In the beginning, I talked to our friends and asked if they would stop by and visit him. Some declined outright and others just walked away. One said that her husband's sister had had it and her husband cannot deal with visiting anyone else with it. At that time, I belonged to an early morning Bible Study group and I literally begged the men in attendance to visit my husband, their friend, who had been a member of the church for over fifty years and who sang in the choir and ushered and was on the board of Elders. Silence. Finally, a group of four guys came over a couple of times and then stopped because DH had a hard time knowing who they were and they didn't know what to do. Another fellow took him out to lunch twice and then said he couldn't do it anymore. Finally, a couple who we had known for years called and invited us to play cards. She said their brother-in-law had had Alzeimer's and they understood how hard it is. This couple was a Godsend! We played cards with them every couple of weeks until DH couldn't do it anymore. They were always kind and patient with him. Also, we have four children and one of our sons does not visit his dad in MC except maybe once a year. He says he wants to remember him the way he was and it hurts him to see him the way he is. Another son, who lives across the country, always visits his dad and comes as often as he can. Our daughter, who also lives across the country, has been a tremendous help. Our oldest son, also across the country, comes when he can and helps me out around the house. He may or may not go see his dad. I try not to judge them harshly but it hurts. Something that helped me was Bill's article entitled, "The Cavelry's not coming." It is on this forum somewhere and I highly recommend you read it. In the end, I have to choose how to respond to the seeming indifference. I can become bitter or I can ask God's help to forgive and get on with my life. My DH still knows me and for that I am grateful. We hold hands a lot when I visit him and I always try to let him know how much he is loved and cherished. In the end, that is all I can do.

Brenda

tonyac2

https://alzconnected.org/discussion/comment/280902#Comment_280902

It’s crushing to see the lack of interaction from those we love and those we thought were family. The church is what upset me more than family — they should know better. I often thought I’m glad my DH is not aware of their neglect. I recounted his involvement and commitment, and concluded, out of site, out of mind. I’m struggling with going back to church. Their absence was very painful for me, and now in stage 8, even more so.

dcare45

As the song says "Everyone I know goes away in the end"

I'm trying to be forgiving. Forgive us our debits, as we forgive our debtors. Boy it is not easy.

Timmyd

https://alzconnected.org/discussion/comment/280908#Comment_280908

I find inspiration in the exploration of many different religious faiths. The song verse reminds me of the 4th of the 5 remembrances in Buddhism. Roughly translated is reads as follows:

"All that is dear to me and everyone I love are of the nature to change. There is no way to escape being separated from them."

Jane1111

I am new to this forum, wishing I had come sooner, sole caregiver for DH (as a newbie I have to check - that stands for dear husband?) and have been surprised at how his siblings ignore the situation - but it is comforting to hear I am not alone in this experience - I am very grateful to read all of this today

Lethe

https://alzconnected.org/discussion/comment/280079#Comment_280079

This is really beautiful, especially the “today I will love you one more day”.

jen ht

This post and these replies have helped me so much. I am so grateful for you all and for your honesty.

I saw a clip recently and it also helped me. There are pieces that don't apply (she speaks from the caring for a parent perspective - this post is on the spouse caregiver page).

It's from the tiktok account of a woman who is in a season of walking her parents home due to cancer for her mom and Parkinson's for her dad. Her tiktok is "how to help your parents die" if you'd like to look her up (if you use TT). She is a social worker and she does a good job sharing reality from the "messy middle".

May we be well 💜

Jen