The Loneliness

Hi, @gratia I'm Scott, and I was my wife's caregiver for her 14+ year war.

I agree that the loneliness of caregiving can feel overwhelming and very isolating.

It was the thing that drove me to Mayo Connect -- I could reach out at any time of day or night and be part of a community that understood the constraints of caregiving.

Due to a lack of time, I began writing emails to friends, letters to others, and a journal for myself. It really did help me feel some kind of connection. At least this gave me some kind of connections to take a small bit of the loss I was feeling due to my wife's 'new' life.
'
Strength, Courage, & Peace

I haven't experienced the physical loneliness as much as I have the loneliness (and fear) that comes with making all the decisions that we once made together. There's just no one to turn to, and everyday fills like this "push pull" of what's next on the list to decide on. Maybe it's my own personal situation on top of the MCI diagnosis last year with my husband, of a move out of our house due to mold, in limbo for 3 months in a hotel, a rental home that also had mold and moveout with a financial loss, another rental (that has yes, turned out great and I"m still in), and living out of storage for 7 months now while we're remodeling with that whole set of issues. Then planning to sell and finding someplace else to go all in the middle of all these lequembe infusions, MRI's, Pet scans, support groups, and just the normal everyday issues that come from insurance company changes, technology issues, medical portals, 1800 numbers that have all gone to AI, where just trying to get a "person" to next to impossible. So, on the brighter side, I'm sorry I'm ranting this morning - Thanks for listening......Ah, another day of decisionmaking and caregiving.......But the sun just came out! Best, Karla

I hear you Karla. There is so much to manage when trying to take care of your loved one and everything else that they used to do but no longer have the mental capacity to take care of. This may seem silly or unhinged to some but I find myself having conversations out loud with myself. My husband can no longer participate in a conversation with me and I miss having someone to talk to about anything. I recognize that I am a very social person and I miss connecting to other people and finding out more about them. My husband once said that I am the only person he knows that can engage in a conversation with the check out clerk at the market and know all about how her day is going before all the groceries are bagged. The best thing about talking to myself is that I can verbalize what is on my mind good or bad in the moment. Saying it out loud seems to help me cope. Sometimes I think that I am really talking to God out loud. I think that we have to find a way to express our feelings to stay sane on this dementia journey. For me, keeping a journal helps as well as sharing my thoughts on this site. And when the sun comes out after a cloudy morning, I too feel that it's all going to work out somehow. Thanks for listening.

@kjc48 wow ! I can’t even imagine moving at this time, let alone living in a hotel and moving 3 times. You are a strong person, I hope your situation improves. I agree finding support is best way to get through this,

Good morning Gratia, I can definitely relate, we have gone from a full life with our on interest to just trying to figure out how to get through the day. Fortunately for me my husband is a veteran and our VA has a wonderful caregiver program. If your husband is a veteran I would definitely recommend looking into it, if not I agree with Scott any kind of support helps, and there are a lot of groups. I did a google search for my area and found several support groups that meet one a month just to talk and get information. I hope this helps.

@kjc48
Oh yes, the sun will always come out…if not today, tomorrow…we all try our very best to bring some joy to our loved one, and that joy carries us through the not-so-sunny days…take good care

@IndianaScott Hi Scott, thank you very much for your response. I agree that forums like this one are very helpful. Especially when it’s not something everyone can relate to. I greatly appreciate people like yourself who share personal experiences and offer invaluable feedback.
Thank you!!! 🤗

@kjc48 Hi Karla,
You are dealing with a lot! But, I love your positive attitude, and I always enjoy reading your comments. I just need to continue to “reframe” daily. I’m also about to ‘liquidate’ my life of 25 years in another state, and the dread of that process is adding weight & overwhelm to everything right now as well as compounding the aloneness of it all.
I try to “reframe” it as an opportunity for a new chapter ahead.
Your positivity gives me hope. Thank you!
🤗❤️

@akela09 Good morning, thank you so much for your reply. Actually, I’m caregiving for my mother, and fortunately, my sister and I are alternating, but my life has gotten so messy due to this upheaval. I just miss the old me. But I know it will never be the same so I’m trying to be ‘adventurous’ and open to what the new situation could be. I still need to go back and move out of my apartment & city that I was in for a very long time, and it’s making me feel really sad, lost and alone.
But I know it’s a part of life that none of us could plan for.
Hugs! 🤗

@gratia Your support gives me hope. Please know that. It feels good to know there are so many on this site, that care unconditionally, can empathize and reach out with loving support. Yes new chapters......that's how we have to look at this! I do try to be positive but wow, it's been "tricky" lately for me. And it doesn't help that I'm up there in years and losing my hair. Not a little alot of it. Sounds silly, but men look good bald. Women...not so......especially this woman. Oh well.......Next up, caregiving with a wig! Best, Karla