Abandoned by family and friends

Lindsay22

My mother was a very active and social person in the before times.  She had so many friends and social events that it was often hard for me to keep up with her calendar! Lunch with the girls, yoga and coffee after, prayer group, movie club etc. etc.  Not to mention our big family where she never forgot a niece or nephew's birthday and great niece's and nephews too. Always sending a card, attending parties, sports events, performances, long after I was grown and living out of state. And now she has been completely abandoned by all but two of her "friends". Many of her friends have been in our lives since I was a child and know me well, attending my graduation party, wedding etc.  No one calls me or asks how she is. We are connected on Facebook and many of them like and comment on posts I make about my family but don't message or call about my mom.  I feel so angry with them! I know when she dies they will show up to the funeral and cry and say how sorry they are and I just want to say "where the hell have you been for the last X number of years???" It honestly makes me want to not have a service when she passes but I know that isn't what she would want.  She has always been a far more forgiving and kind person than me.  I guess I should focus on that but it's so hard!

toolbeltexpert

Lindsay 22 boy do I get that. Family and friends. A childhood  friend that knows me and dw was gonna come around Christmas, when I called him to let him know about dw condition, he was still coming, then a week later let's me know that thier plans changed. My dw sister never calls we have to call her. There is an old gospel song. Give me the roses while I live trying to  cheer me on, useless  the flowers that you give after the soul is gone. It's  those few that calls or visits really that do help us to carry on!

Jo C.

Lindsay, I am so very sorry.  From experience that mirrors yours, I understand how hurtful that is on behalf of our mothers.   My own mother was socially very active, belonged to various groups, was active with her family, was a giving person and especially lovingly kind to her grown nearby grandchildren; she also had four sisters.

After the diagnosis of dementia, the silence from friends and family was profound.  I sometimes think it was because they were so very uncomfortable; did not know what to say; some perhaps even fearful.  It was as though my mother had been somehow erased. 

I did try a couple of times to have a very small afternoon gathering of just a few friends for coffee and cake; no one accepted the invitations.  The grandchildren, grown as they were, simply disappeared.  Crickets.  Computer communication, nothing.

It became a situation, hurtful as it was, where I had to learn to let go and try to approach it from another direction without "putting off" the disappeared ones.

Not too much communication about symptoms and changes of the disease went out any longer, except for those who may be interested and actually communicate, which for my mother was nil.  To those folks we are discussing; if any of them might actually ask about my mother,  I would simply say, "No changes, we're doing okay."  Even if we weren't.  No details to further cause distance with others.  Sadly strange to realize that those who cared and asked were people with no historical connections. 

If your mother is aware of the absence of friends and is upset about it, that is one thing. But if she is not aware and the hurt is on your behalf, then that is actually a plus for your dear mother as there is no negative causing her upset.

It is now about nicely pleasing your mother when that can be done. In that light, you could perhaps let the friends and family know on your computer communications that while visitation is no longer as it used to be, that your mother loves greeting cards and would appreciate receiving cards in the mail.  That would be delightful for her to get greeting cards even if her dementia has advanced to where she is not processing senders; it is still nice to get those pretty, colorful cards.

One of the worst times for me was when an important birthday milestone was reached for my mother.   I did let friends and family members know a couple of weeks before the birthday that the date was such and such and how much mother loved receiving cards.

The birthday had arrived and not a single card had come in the mailbox.  Not one.  Not from old friends, not from kids or grandkids, not from her sisters.  It was about my mother; and it seems it was also about me in a way.  It simply was not right no matter what.

So . . . I went to the Hallmark store and bought a bunch of different cards.  I went home and signed them from different friends and relatives.  Mother was absolutely delighted and smiled to no end with her lovely cards.  She did not process who they were all from, but she was happy and looked at them over and over again.

So many of us here have experienced this, we are all with you in understanding.  There seems to be no magical way to have people suddenly become the nice folks they seemed they used to be, alienation by calling them out is only a negative for us who certainly do not need one more scintilla of negativity and nothing to be gained.

You are a loving, caring person and your mother is blessed to have you by her side.  

With warmest of thoughts being sent your way from one daughter to another,

J.

SusanB-dil

Hi Lindsay - same here.  Friends and family have scattered. 

I agree with Jo C - i think they don't know how to handle it.  

perhaps they don't know how to take this person they don't really know how to relate to any longer (?)  MIL's sister is a constant, that is about it, and that is a good thing. Her sister has 2 kids, they actually did come last year on her birthday. (i think her sister may have said something to them, and that's ok, too. it made her happy)

TBExpert - my mother used to tell us to give her flowers 'while she could still enjoy them', and if/when something happened to her, use the money to give to favorite charity.

Neverends

The friends that my 88 year old mother did have  tried to take advantage  of her financially.  In one particular  instance my.mother wrote a check for 500 to her friend for puttting up a curtain rod. I nipped that right in the bud and became her POA for medical and financial. That was many years ago. No one calls her not even her other children.  All her siblings are dead.  I understand  your sadness, I feel it too.

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dayn2nite2

Same happened to my mom and I realized that mom was the “giver” in all her relationships.  When there was nothing she could give (a card, present, visit, ride, money) these people vacated her life.  Very sad.  I didn’t even publish a death notice for her because if I had even one of them say how sorry they were, I was going to let them have it.

Wilted Daughter

Linsay22,

I can totally relate. I feel it's human nature to stick with you when the going is good and share common interests, but when things turn bad is when the rubber hits the road. Not to say they don't care...it may be awkward for them to express or provide help in this situation. 

The discussion of dementia is taboo which further adds to isolation. To fit in you have to cover up the dementia/don't disclose, to prevent being ostracized (us vs them). It is hard to fit in and act like everything is fine as a caregiver (some may have mastered the art), but I have not.

As far as the funeral...let go of those thoughts and remember after the rain the sun eventually shines. It's all part of the ups/downs of caregiving and how dementia permanently changes our lives. I do hope you feel better about the changes and find new friends who relate better. 

Wish you were near we could go for coffee or a walk...

mommyandme (m&m)

I think for some, procrastination gets the best of them.  They waited so long, then when they think of it they feel awkward and uncomfortable for waiting so long. A vicious cycle is created sometimes. A lot of the procrastinators may feel worse than you do. Bittersweet I suppose. 

This disease is horrible in so many ways. 

Battlebuddy

Lindsey 22,

  Thanks for sharing. I’m so sorry for your poor mom. She sounds like a wonderful person. She deserved better. Unfortunately it is very common to be basically abandoned by friends and family. 

   I have seen this first hand with my husband. I was angry for a good six months to a year, before coming to some sort of acceptance of the situation. One thing that brings me peace is that I have come to accept that everyone has come to a decision about how often they will get in touch with DH. I had to accept that really nothing I do or say will change their minds. ( believe me I have tried: Educating them , cajoling, threatening , anger, sweetness, and even a little bribery. Lol)  I also accept they will be no shows for the daily grind , but thought they would come out of the woodwork when he went on Hospice ( nope) or when he had his recent Grand Mal Seizure ( nothing)

  So I am going to take JoCs advice and just give up. No more updates. I’m going to borrow her generic phrase and just rely on the Hospice folks and one brother in law for support. It’s not easy to come to this acceptance , but I hope you find it. Hugs for you and mom

   

Iris L.

I disagree that we are hard-wired to avoid the sick.  People rally around those who are devastatingly ill with cancer and HIV/AIDS, along with other severe diseases.  Why are PWDs treated as if they are already gone?  It happened to me, my closest friends abandoned me because I talked about my memory.  I never reveal anything about my cognitive status to family or anyone else because I already know it won't be received well.  Abandonment by family and friends is very common.  I don't know the answer for this except to form bonds with people in the same situation, the way we do on these boards, and in support groups if available. 

Iris

Gmom28

WOW I feel like I'm reading about our life. What would upset my DH was when family/friends would say they would call or stop by at a specific time and not follow thru. I stopped telling him if someone was calling/visiting. This happens with immediate family and close friends. We had a very close friend who was getting a divorce, kids weren't speaking to her, she was diagnosed with cancer, and we helped her through all of that. Had her over for weekend stays, meals, family gatherings etc. We haven't heard anything from her. I call it's the same story, I've been busy with work. It's so hurtful. I agree with the Support Groups we have connected with have been the best support. I can only imagine all the people who will pour into the funeral home and service when the time comes. I get sick thinking about it. I've made a strong effort to visit, call, text or send a card to those we know who have struggles/challenges. God Bless Us ALL.

VeeM

All of this has resonated with me sooooo much. My own brother never calls or comes by to see how mom is doing. He literally lives 15 minutes away. I agree with Iris L that people rally around people with other diagnosis but those with dementia not so much. That’s part if the reason why I took so long to talk to some of my friends about my journey with my mom. I am happy that I have close friends that have known about the situation for a while are there for me. But I was sad when I finally told other friends about it and besides sharing an encouraging thought never once ask me how I’m doing or even how things are going. I have reached a point where I just don’t care who is around and who is not. I realized I often did the ground work to keep the relationship going and I’m done doing that. I don’t have a lot of free time so whatever time I have I spend it on those that try just like I do. I personally don’t care whether people are busy or not, they feel uncomfortable, or whether they have the desired to help but time just passes them by or don’t  know how. Their good intentions without action mean nothing to me. Some sadness but no hard feelings; I see it more as cleaning house. Hang in there everyone!

harshedbuzz

Victoria2020 wrote:

Abandoning a PWD who is family or a former close friend is so common I have to wonder if it isn't hardwired into most humans as a survival tool-- see something "off" --avoid it.

The caveman/woman who went into the ill neighbor's cave to see how they're doing may not have lived long enough to pass on their genes.

With all due respect to Iris, I have witnessed this as a parent and advocate of kids on spectrum. It's not so much the risk of an obvious contagion, but the neurological piece. Even little kids- kindergarten age- will notice and avoid kids with obvious stereotypic behavior- flapping, edging a playground, posturing- or one with tics. On the occasion I have asked kids avoid another, it's not about a threat to their safety, its a visceral reaction to "weird". 

Leave it to me to have my own little family experiment. My sister died from complications of HIV/AIDS in 1994 at the age of 33. She had a lot of friends and they did visit her regularly until about 6 months before she died. But in the last 6 months, she developed dementia (probably the same WKS my dad had). She forgot who people were and the stories they wanted to share, she was paranoid and accusatory with those closest to her but not her friends. Still they drifted off until her memorial service when they packed the place. 

Lindsay-

What you are seeing is very common. PWD become pariahs in their families and communities. Those who never appreciated the relationship won't suddenly reverse themselves. And those who adored you mom may either find her current state "too painful to witness" or "prefer to remember her as she was" not understanding the concept of any relationship being a two-way street. Then there are the "shell people"- they're the ones who are already mourning your mom's passing because who she was to them is gone. 

After my dad developed dementia, I moved my parents back near where they raised me. They ran into one old golf buddy whose wife had dementia and they had dinners out together for a time and dad's beloved brother would deign to do a drive-by visit every 6 weeks or so. We did graveside services followed by a luncheon because I didn't expect many people to show up. I was so wrong, the luncheon was so crowded by the friends who had been MIA for 2 years that my son and husband ended up eating alone in the bar to free up seats. My butt is still chapped over this. 

HB

aod326

I found it shocking and saddening too. I was especially frustrated at DH's so-called close family who totally disappeared. I was definitely mad at the lack of help or support but even more just so sad for DH at how upset he'd have been if he'd known. 

At his service I had to bite my tongue many times at the tears and "but he was so wonderful - it's so sad"s.  

However, it also astonished me that some unexpected people really stepped up. Some of our friends were happy to come and hang out with him and could act as if his speech and behaviour were totally normal. I think with a lot of people they feel awkward and don't know how to deal with, for example, the constant repetition of stories. DH's ex-wife, who had refused to speak to me for the first 16 years we were together (he was already divorced when I met him - I didn't break them up!) was a rockstar. 

Like battlebuddy, I did felt less frustration when I reached the realization that I couldn't change their actions. Whatever their reason, and whether I think it's fair or not, it's their conscience. 

Scooterr

    Lindsay, I totally understand your frustration and anger. My wife and I have been married for 40yrs. She (Sue) was in Early Childhood education for 20yrs, and through the years made many friends and colleagues. She was diagnosed with ALZ in 2019, and from then until now she has become nonverbal. Now her old friends and what is worse her on family members, even her twin sister has stop communicating with her.  No visits, no phone calls nothing. I to was filled with so much anger, I let it consume me, I lost focus on the most  important thing in my life my wife.

     One day I was talking a lady who had been in the same position as many of us has. She told me, "no matter how mad and upset you get, no matter how much anger you carry, it will not change your circumstance, it does you absolutely no good. It has no place in your life at this time focus on your love one and take care of them."  Was she ever right. The more I thought about this and the more I repeated this to myself, I learned to let it go and it wasn't easy, but it bought a calm and peace over my life and it lets me focus on my wife. I had stop letting them control my thoughts and feels. Hang in there.

JJ401

Long term, eventually fatal, illness tends to lead to disappearing family and friends. I learned this when my first (nonAlzheimer’s ) husband was dying. He had a large family (nine living siblings) and only one sister visited him during his hospital stays. That same sister was the only one to stop by the house after he died. But, the others met and discussed how they didn’t like the funeral arrangements and appointed one sister to ask the funeral director to change them. (didn’t happen)

This time I expect nothing from DH’s siblings and kids. Siblings are all mid 70s up, not local, and most are not in good health. DH kids — one we have not seen in person since before Covid. The other I met with four months ago and laid out DH’s multiple medical issues and what would need to be done if I predecease him. She has not called since. 

I know my help will be limited to whatever my kids can do to help me. I know DH will need to be placed when it gets too much for me. 30 years ago I could keep DH home until the end. 30 years later I most likely won’t be able to. Meanwhile we soldier along, day yo day.

robinja

FWIW, I think my mother scared off some of her friends during the early stages of the disease. I understand that she had some altercations at some of her regular social outlets (accusing people of cheating at Bridge Club, for instance.) Later on, Mom and Dad moved out of their house in the country to a condo in town, affiliated with an AL facility. Mom had ideas that her friends would stop by and see her if it was more convenient. Sadly, that wasn’t the case, but it did make it easier for my brothers to check on them, and they got some social contact attending meals and activities at the AL. By this time, Mom’s realization of her condition made her anxious about socializing much anyway. 

Just another perspective on how the disease can affect relationships. 

Lindsay22

Thank you all for sharing your experiences. I had no idea that this was so common.  Once again I am simultaneously comforted that I am not alone and so sad for everyone else who is going through this too.