Persons with Dementia and Their Absent Friends

In anticipation of the real subject of this post, I want to talk a bit about last week which was, for me, a difficult up and down experience and certainly tested my ability to live only in the here and now. Our life is getting smaller, some little bit because of my desire to minimize aggravations but also as it was made clear that connections that I had always assumed existed, really didn’t exist.

I hadn’t told Jackie’s caregiver that Monday was her birthday because I didn’t want put any pressure on her to get Jackie anything. When I came home from the store with a little rose bush in a pot and a nice little cake, I see that her caregiver had also brought a cake and some gifts for Jackie. Jackie was beside herself happy.

But, except for a message from a beloved niece and my bio-kids, the day was quiet. Where were the calls from her children, from her relatives, from her friends?I admit that I was angry. Not the red-in-the-face, yelling kind of anger but the disappointed in the human race kind of anger. 

Jackie had been especially close to two people, she did everything she could for each of them as they needed it and, when individually their lives were in disarray, Jackie lent them money.

Not huge, buy a car money, but wow-that-will pay the rent for a while money. So I wrote to each of them saying that, since there were lots of expenses associated with Jackie’s care, that getting the money back would be a help. 

Of course, no answer. No excuse, no expression of regret, nothing. 

And thus I come to the subject of this post – ‘what is wrong with people?’

Yes, sometimes it’s difficult to interact with someone with dementia.

Yes, it might be saddening.

Yes, it might be frightening when one’s own mortality is revealed.

Yes, it’s inconvenient to waste a bunch of hours with someone who really doesn’t understand and who, without explanation, might go off and go to sleep at any moment.

I’ve been on this planet for quite a long time and I’m pretty familiar with all the excuses – good and bad – and when all is said and done, the excuses don’t count.

I don’t care.

Ignoring Jackie, saying that she doesn’t count enough to absorb a bit of discomfort or unpleasantness, neglecting even to call routinely to ask how she is getting alone, is an enormous insult to her and to me.

It makes me think that we have wasted every moment and penny that we’ve used to support our half of the relationship.

How can her caregiver, a person that we’ve known for only a few months, make more of an effort, take more care than people we’ve known in some way for decades.

So, I’m done.

Not with life, not with my friends, not with those people who’ve evinced some sympathy but with everyone else.

 

14 thoughts on “Persons with Dementia and Their Absent Friends”

  1. MY dear man, I wish I could give you a hug …I totally understand..My Mom and Dad were the type that would help anyone…THEY ENJOYED LIFE, they played 45s with many FRIENDs over the years…going to their place, them coming to theirs…some friends passed away…some new friends were gained…they camped for years,met lots of friends that way…my parents were married about 60 years when my Dad got Alz…and later I found out by sneaking a look at the chart that he also had Lewy Bodies Dementia…not sure why they couldn’t have told us that but, sure glad I know for future reference,,,You are a dear soul…she is so blessed to have you care for her…and I am so sorry beyond anything I can imagine that the so called FRIENDS and FAMILY aren’t who you thought they were,,,yes that is ONE of the lessons I learned as well…there is a difference between FRIENDS and ACQUAINTANCES,,,,,I also learned that there are Friends and Family that can’t weather the storms…they are fair or good weather friends and family….It boggles my mind that they think it is OK to give lame excuses, why they aren’t coming, well they won’t know me anyway..SO WHAT, they know LOVE, , touch and caring!! …AND it is just hard to take that when you needed them the most…they leave you… I couldn’t understand why my parents had so many friends yet no one came to spend time,,,,Mom didn’t have dementia,they could have called and said do you want to get out for a drive,,,or come and play cards while your Daughter(me) stays with him..or come visit it for half an hour NOPE..none of that..the caregivers , well 2 of them became really good friends.can you believe that??? out of ALL those years of friends…???You my dear are not alone..I think it is great that this is posted so others can read it, and understand…I also learned that some people ,especially family members were just not care giving types and can’t handle sick ,ESPECIALLY when it comes to brain issues..and if they can’t then I don’t want them around anyway…I had enough to deal with.lol…well, I can’t believe it but my Dad will be gone 10 years this November….I hope some new friends come into your life.. and you can get over the faults of the old so called friends…what goes around comes around I always say..lol..Take care…you have chosen a caring caregiver, who remembers Jackie’s Birthday..that’s great!…she’s a keeper…Just focus on keeping yourself and Jackie healthy and happy when it can be possible….HUGS…Sam

    1. Sam,
      Thanks for the comment and the cyber-hug. I’ve become a bit more proactive about taking care of myself, keeping active physically and mentally as much as possible.
      I do notice that I am not as facile with spoken language as before this started. Perhaps I am catching it from Jackie.

  2. Lew,

    I completely understand. Thank you for your blog posts. I look forward to them, though I know that they are inspired by some incredibly difficult situations. It’s refreshing to read your honest insights. We need more people who have the courage to share even the darkest of their feelings. Please keep journaling and sharing. I am glad that her birthday was a delight. Much love to you and Jackie.
    Anna

    1. Anna,
      Is this my old friend Anna from somewhere in the South? THere are an amazing number of Anna S…….s.
      She’s not an ‘old friend’ in the sense that she is old but an old friend in the sense that I’ve known her for a longish while.
      Whether it is or isn’t, thank you for taking the time to write a comment.

      Best to your entire family,

      Lew

  3. I accessed your link to this Blog from the Spousal Caregivers- Well Spouse Association Facebook site, which I just joined. Your message resonated with me…the justifiable hurt and anger. My husband, once a practicing physician, was diagnosed with Progressive Multilple Sclerosis and deteriorated rapidly into a wheelchair. I am a full-time, employed RN and manage our home, and raised two, now young adult children. I vowed my husband would remain at home and he has, despite this being an enormous stress, after I care for others all day and then care for him during my time “off.” When my husband was “healthy,” friends often solicited medical advice from him, which he graciously responded to, as I also have and continue to do for friends who text me questions (they never call anymore, and the texts are for personal help, never a hello, how am I or my husband). I reply to them, because it is the right thing to do, even though they neglect my husband and me. These “friends” are phantoms- they floated away from my husband and me when we needed (and still need) friendship and support the most. His colleagues and many of his relatives have also disappeared from our lives. The cruelty of my husband’s disease stealing his independence and dignity, is matched by the cruelty of people who ignore us. So, know you are not alone and that there is grace in our strength.

  4. mmm very close to the bone — radically different amount of ‘friends’ to three years ago when the dementia started to ‘bite’ – presenting as depression and unable to cope and be the STRONG one for everyone..
    Pacing myself – spreading myself VERY THIN not be too over bearing exhausting or whatever it is that keeps the previous friends away…
    I’v been a loner all my life -happy in my own company – why should I expect it to be different now- I’m just not very reliable loner anymore..
    But the dementia me needs crowds ‘live’ and made to interact to thrive
    I’ve got my back covered — my guardians family and several very dear true friends — very blessed indeed..

    1. Valerie,
      Judging from what I sense from others, you are more lucky than you know in your choice of friends and guardians.
      It may be that it is only people without support who post on FB groups and there are bazilliuons of caregivers and PWD out there surrounded by clots of happy friends – but I don’t think so.
      Best wishes, best of luck, best of everything,
      Lew

  5. Seems like a common theme my wife has been described as one of the sweetest women alive. But when she got ill with Dementia at age 50 her friends and family abandoned her like cockroaches in a tenement kitchen when the lights are turned on. I spent every nickel I ever made to maintain our lives, including two kids in college. When I asked my parents for money they said they didn’t have any, even though my father was able to buy a new yacht (not a boat). My anger is beyond rational. But now she is resting in peace at age 55.

  6. Oh Lew – You know I completely get this. This as happened to us also. Its unbelievable how many people just walk away because they don’t know how to handle it or what to say, no excuse as far as I a concerned. I do have a couple of really close friends who have gone above and beyond great full does not begin to express my gratitude and of course my immediate family as far as everyone else goes I too am done!

  7. This is so, SO true. I don’t know what’s worse – myself noticing how many of her friends have dissapeared or her NOT noticing. Very sad and I share in the reasoning behind your anger.

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