Keeping up Long-distance Friendships for People with Dementia ~ Truth, Ethics, & Editing

This is the third holiday season that Mom has asked me to send out all her Christmas cards, this after she unknowingly disposed of her address book listing contact information for her life-long friends.  Since she tended toward social butterfly, the list was impressively lengthy, even as she entered her mid-70’s.

I’ve been looking for the address book for several months in her small room at assisted living, but am now convinced that it’s gone forever.  It’s not rare to find valuable items that she’s tossed in her garbage can accidentally.  Her staff and I fish it out when we catch it, but they probably didn’t recognize the ratty old address book as her social lifeline.

I haven’t been able to tell her that her treasured book is gone, and maybe never will.  She thinks it’s at my house, which is my little white lie when she asks about it, to buy time until maybe she’ll forget about it completely.  She’d be devestated, and I felt confident that with a lot of detective work I could recover most or all of the addresses.  So guess what I spent about 8 hours working on over the last few days?

So far, so good.  Only two of her good friends are still missing, and I’m hot on their trail.

Mom has always believed that holiday cards are not appropriate without a yearly update inside, so she wanted me to include a detailed letter.  The last couple years she provided the bulk of the information she wanted to convey in her messy Parkinson’s scrawl, and then I did just a bit of editing so it would make more sense before typing it up.

This year, what she dictated to me was out of character – completely self-centered, depressing, and her swearing was rampant.  It definitely had personality, and the cursing was amusing at times, but I ended up doing a LOT of editing, especially to include some of the brighter and humorous moments of her year and to remove the parts where she repetitively wallowed in her misery.

I’m not a Pollyanna, but am aware that many of her friends are facing their own struggles and they already have a basic idea about hers.  I don’t feel the need to put another load of worries on their shoulders by gifting them at Christmas with the gory details.  I neglected to let them know that Mom can no longer walk, can’t speak or eat on certain days, and has just qualified for hospice.  (That’s a whole other blog post to come.)

I feel my job is to facilitate the bond Mom has shared with these dear people, some since high school, in a way that doesn’t hide her illness, but doesn’t fixate on it either.   Most of her old friends are powerless to make a trip across the country, and some have no idea how to relate to the new Carol Jean who can’t always get out a coherent sentence on the phone or even remember how to hold it by her ear.  So I try to connect what they have left in common, and leave the rest.  I figure that if anyone  really wants the lowdown, they’ll give me a call or ask outright.

I wonder what I’ll do when and if Mom completely loses her awareness of those friendships.  I’d be curious to know how other caregivers maneuver this.  I can imagine continuing the contact to show my appreciation for them existing in her life, and convey that I’m thinking of them, even if Mom isn’t.

There’s a simple, profound comfort in connecting to people close to Mom’s heart who are still out there all across the country.  Having the lines of communication intact with them, even just for one holiday letter a year, makes me feel supported too, even though Mom’s friends can’t “do” much anymore that’s tangible.  In our modern, fast, material culture we so easily underestimate the things that can’t be measured, like a faithful far-away friend who’s keeping you in their thoughts or prayers.

Slowing down to work through Mom’s grand Christmas list always starts out feeling like a huge chore, and then ends up transforming me and serving as a great reminder about what matters most at this time of year.

This entry was posted in caregiver stress, support, and respite, dementia, family issues, inclusion and tagged , , . Bookmark the permalink.

4 Responses to Keeping up Long-distance Friendships for People with Dementia ~ Truth, Ethics, & Editing

  1. momsbrain says:

    Catching up here… first, I’m so glad Thanksgiving worked out nicely. I laughed out loud at what your mom said after completing her meal. Sounds like something my mom might have said at one time, too.

    I commend you for maintaining these relationships with your mom’s friends in this way. What a big job that is. Most of my mom’s friends are here in town, and they all know she has Alzheimer’s. The last real update I gave them, however, was her move to the Alzheimer’s nursing home. Since then, I have left it in part up to them to ask me things. Some may read my blog. Virtually all have withdrawn except for a longtime friend of Mom’s who lives in Cleveland. Every time he comes to central Ohio, he visits Mom. He used to take her out for coffee until she started to resist the outings. I send Christmas cards to a few of Mom’s friends who are my friends, too. This year, in just one card I simply said: Mom’s still hanging in there. I predict that the next time I have any significant contact with them will be upon my mom’s death – assuming they see her obituary, because I do not feel inclined to give personal notices to them after all this time. That makes me both sad (that we aren’t connected, and also that I am a little hostile about it, apparently), but it also is reflective of the nature of this disease.

    You always provide good food for thought. I hope you have an enjoyable holiday.

  2. Megan says:

    Thanks Emily.
    I too feel sad to see a few more of my mom’s friends withdrawing each year. I guess it’s human, and yet it still stinks. It’s interesting to me to see which ones have stayed most loyal- her 2 best friends from high school, two nuns she worked with at the hospital, her two best friends that she met latest in life, and her hairdresser! Her/our relatives seem to have all backed away.

    Hope your holiday time is good too.

  3. eahelfgott says:

    Hi Emily,
    I’ve been lax in commenting but am so glad you continue blogging. I have been remiss in contacting people Abe knew, though I did email his high school buddies; and presumably they got the word out. Your strength and devotion are lovely to witness. Thank you for being here, Esther

  4. JudyDearing says:

    Ahhh, Kind and thoughtful come to mind. For eight years or so, my mother’s Sunday School class were so faithful to send her a note or even to stop in ever so often. Since her passing in August, I find comfort in sending her class a few $$ ever now and then to support their ministry. This is a way I honor my mom and her friendships.

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