National Caregiving Research and Report - 2015

Thanks for starting this discussion. Caregiving can be a very lonely.<br><br>Sent from Carole Griffith's iPad<br><br>

You are very welcome, @carolesue. The isolation and loneliness of caregiving was one of the major issues I had in mind.

One of the nicest aspects of Connect is you can 'connect' anytime, day or night. I also know caregiving can lead to some very weird schedules in life!

Peace and strength

@carolesue
Thank you for your very honest and real comment. I couldn't help but notice that, as my father sank into the netherworld of Alzheimer's, my parents' friends just didn't come around any more. I am noticing the same with us, as my husband is sinking further into dementia. Another side of it is that, as a 24/7 caretaker, you can't just run out on a whim when friends want to get together, or even, often, for a planned event.

On a lighter note, I have made a playlist of up-beat, energizing music selections on my computer, that I have burned onto a CD, and playing that when I'm really down, helps. Sometimes it even gets me moving to the beat!

Hi @macbeth I LOVE your playlist idea! While my wife was fighting her cancer I really missed music, radio, tv, etc. She found these to be too overwhelming for her senses. Now I relish playing my favorites every the time I can. Can't get back into TV, but that may be a good thing 🙂

I also agree with you and @carolsue on the isolation/loneliness aspects of caregiving. They can each be truly challenging at times! It was this aspect of it, which sent me searching and finding Connect. My wife and I had many mutual friends of more than 40 years who simply disappeared from our lives when we got my wife's diagnosis. I have two siblings, both of whom never stepped foot in our home for the 14 years of my wife's disease.

This aspect of caregiving also impacted my wife greatly, which I did not see coming. She could not understand the great number of folks who totally abandoned her at her time of great need for not only a visit now and again, but a call, note, card, email I could read to her, etc.. I knew it was felt by me, but I did not realize how profoundly it was effecting her until one day when she asked me to grab a pad of paper and pencil. I did and she told me she wanted me to write down the names she was going to recite to me. I said sure, but asked her what for. She said it was the list of people she wanted me to invite to her 'celebration of life' (rather than a funeral), which she had designed and wanted held in our home. I asked her if she was sure and she looked me straight in the eyes and said "Scott, I don't want anyone standing in our living room blowing smoke up your (insert body part here) saying how much they cared about me after I am dead, when they didn't give a (explicative deleted) about me when I was alive!". And so it was...

I know Reverend Martin Luther King was talking about something different when he said this, but I often recite this quote from him when I am describing caregiving to others. It is: "In the end, we will remember not the words of our enemies, but the silence of our friends.”

Peace and strength!

@IndianaScott
Yes, my husband has difficulty following even a half hour sitcom nowadays, let alone a movie or a full game played by our favorite football team - once one of his greatest interests. We don't always like the same music, even though we both like various genres, so I usually try to play my "UP" playlist while he's showering, or on very low volume while I'm in the kitchen, cooking or baking. It's not always easy to enjoy your own entertainment with an open floor plan.

I appreciate your validation about "disappearing friends". Oddly, it's nice to know we're not alone in that. I was beginning to take it too personally and feeling pretty angry about it, but maybe it's just part of the human condition - avoiding the unpleasant. I would like to think I would still be there for my friends if the circumstances were theirs, rather than mine, but who knows. It reminds me of "The Metamorphosis" by Franz Kafka. If you haven't read that, you should, but I'll warn you that it can be depressing.

I like your wife's spunk, attitude, final arrangements, and even her language. I think I would have enjoyed a friendship with her. Also, I love the MLK quote. That is so strong, and so true.

Peace and strength to you, too, and to all of the followers of the caregivers site.

Good morning @macbeth. I hope you and your husband are doing OK today. I send a weekend hello to all the caregivers here too.

I smiled and got a nice chuckle from your 'open floorplan' comment! While it can be quite lovely for access and viewing lines, it does tend to interfere with any caregiver's 'me' time.

Thank you! I now have "The Metamorphosis" on my 'to read' list. It may have to wait a bit as I don't do any good with sad yet, let alone depressing. Our grandsons asked me to watch the Disney movie 'Up' with them two weeks ago and I was a blubbering old man. Our one grandson (6 years old) kept saying 'It's OK Grandpa. It's only make believe!'

My wife surely did have spunk and in her later times a bit of an enjoyable mouth on her. She got to the point I think when she realized if she had something to say she was going to say it -- and not waste her time worrying about it, weighing it too much, etc. By the way she even picked her own Celebration music. It was interesting to see those in attendance react to hearing music they knew, but most likely did not expect at such an event. Plus as a decorator by training, she asked each person to wear something with their favorite color on it! People were pretty surprised when I answered our door in a purple sport coat 🙂

I will try and not beat the dead horse of disappearing friends, but it is one of the tougher issues for me to come to peace with. I know MK's fight was only her fight and not our friends or family, but she also was one of those friends who, when she was able bodied and able minded, went out of her way to support them in some very trying times, often when others had distanced themselves. Two couples, who we knew for 43 years, back to dating times before we were married, raising our kids together, etc. have yet to even acknowledge my wife's death. Truly a strange component of the human condition. I now keep a box of cheap, blank cards at home so I can be responsive with a note when I think someone could use the contact. Good therapy for me too.

Thanks again!

Peace and strength!