The Loneliness

@ocdogmom Thank you for telling me, "I hear you Karla." Yes, I've been talking to myself too, and I love to journal! Best, Karla

@kjc48

Karla,

You will still be beautiful--with or without hair, or with or without a wig.

Sorry you, Gratia , @ocdogmom and others are going through a rough patch. We can do it!

Love,
George's Wife

@georgescraftjr Yes, George's Wife - been missing you! Hope you are good. Thank you for the kind words. But without hair, oh my..........life doesn't always deal us the things we want. That's for sure. But I guess in comparison with the Althzeimers Dementia, hair loss pales.....Best, Karla

@kjc48 Karla, You are a beautiful person inside & out.
I know a lot of people who wear hairpieces/toppers, & wigs. (I have a small collection) - I’m addicted to vintage scarves & use them as headband/hairwrap. My favorite fun knit hat with cat ears cheered me up all winter long.
Sending big hugs and positive thoughts your way!🤗

I understand. I too enjoy alone time, or my quiet time as I call it, but there is a big difference in being alone by choice and being lonely. Lonely to me is missing my husband being able to talk clearly with me, share things with me, make plans with me… the everyday interacting that makes up life as a couple. This is not how I envisioned our retirement years to be. 😔

It’s a good question- “how do I manage the lonely moments as a caregiver…” The question has made me stop and reflect- do I manage them? Or just experience them? I definitely experience them. It’s so hard to shift from having a life partner and husband that I could talk to and who could keep up with me, share witty stories, laugh at different situations, etc. and having all of that gone and replaced with someone who has circular discussions, can’t follow more than one simple step at a time, can’t discuss options or future opportunities with for fear of sending them into a spiral.
As I think about it, this group and a virtual caregiver group I participate in monthly definitely help by creating a sense of connection. My daughter is my other go-to adult and good friend. She helps me so much. I know she has her own life to live and I try to respect that and her time. I also do my best to stay connected to my sisters and my friends through texting and occasional visits but this definitely takes more effort and can get pushed off in the demands of daily caregiving. I also try to have something more interesting to talk about than my usual day to day when I reach out to them. I don’t think anyone really wants to hear about a morning trying to convince my husband that Mister Rogers was not a Navy seal or whatever other crazy things we spent the morning trying to resolve so he would take his medication and get dressed.
I miss being able to do things as a couple with other couples and have a dinner spent laughing and in engaging conversation. Mostly, he eats in silence and it requires his full concentration to feed himself, This is very different from our dinners “before”, and difficult for others to watch as well.
I don't mind the alone time now that he is sleeping more, and in some ways that is easier than the “loneliness” of being with him and having him not really “being there”. I find myself praying more, and that definitely helps me and reminds me that I am never alone because God is with me always.

@mm180 I am just reading all the responses to "The Loneliness" thread...Thank you @gratia for beginning the conversation. The responses are so helpful and so vulnerable. I feel much the same at times. I recently read about ambiguous loss when dealing with a loved one with cognitive issues and in Alzheimer's disease. Ambiguous loss is a type of grief without closure or clear solution. Basically it leaves the griever (me and you) caught somewhere between hope and mourning. This term describes what I feel. This can trigger feeling of anxiety, grief, and guilt. I had a good cry for myself after discovering this term, yet felt better knowing my feelings are somewhat normal when dealing with this disease. I have been a caregiver for a few years now; my husband is on a maintenance program for Lecanemab with infusions once per month. He cannot be left alone for more than a couple of hours now. He barely uses his phone, has lost his executive function to complete tasks. So, like you, I take care of everything in the household, make all decisions for our lives with limited input from my spouse. Of course, I miss my previous life and feel lonely quite a bit. So I schedule things to do together. Small dinners with close friends, a concert in a small local venue, and walks by the ocean. I need my alone time and have begun asking family to stay one night so I can get away. My first time away was two weeks ago. I came home a new person with my sense of humor intact again. I wonder what will happen as he progresses? I am accepting his diagnosis and shifting my focus to not "fixing" him but adapting to my new reality-easier said that done. @IndianaScott What a great idea to write letters to yourself and others. It reminds me of a book I read recently "The Correspondent". Thanks everyone for sharing your fears, hopes and dreams. Karla @kjc48 Get the hairpiece! Thanks everyone and hugs from Cape Cod.

@kjc48
Hi Karla! My name is Karla too. We have more than our names in common. My husband has PD and dementia. His physical abilities have leveled off. His biggest affliction is Sundowning. He asks a thousand questions and gets angry if I don't give him what he thinks is the correct answer. He is hateful. This is not my husband of 52 years. The next day he remembers none of it. But I do and it is hard to get past day after day. I give every effort to be kind because I know it isn't his fault. If he could change it, he would. All I can say is hang in there. I will pray for comfort and peace for you. Karla

@moea Cape Cod. My husband and I moved from Chatham. I used to run one of the real estate offices there! We're in florida now. Yes, get the hairpiece. I got the wig, but I'm having a tough time. Again, pales in comparison to what we're dealing with daily with delayed thinking, memory loss, sequencing issues, and the load on every caregiver. I feel your pain, and sadness over a life gone by. And I'm glad you can get out, go eat some clam chowder, however lobster rolls for $60.00. OMG. just saw that on TV. Thanks for the support, to my fellow Cape Codder. My husband caught a 900 pound tuna on cape cod waters, prior to his MCI. Best, Karla

@timber2026 Hi , Karla. It's Karla. I'm sorry your husband is angry and hateful. I'm not dealing with that as much. Mine gets flustered, gets irritable, and then it's over. What's in this disease that causes that much of a radical shift. It's all so sad, and difficult. I will pray for your comfort too, and every caregiver in the universe dealing with this. Best, Karla