Hodgepodge contemplation of where we are now

storycrafter

I used to write a lot and participate much more the first few years I came here. Now I mostly read, so grateful for others' sharing, and have hunkered down in my own little corner, poking my nose out once in a while. I just don't have much energy for anything more and am feeling weary and quiet and somewhat detached. At the same time I long for connection and meaning, ways to make/invent sense out of the senseless odd life we now live.

I'm in a strange place in this season of dementia. It was about 14 years ago our lives turned upside-down. I knew something was terribly wrong a couple years or so before that, but no doctors listened. It was like our lives began to tilt like a windmill that lost one of its legs, until a critical point was reached and over it crashed. For several years I searched and studied and grasped for any knowledge I could find. Little did I know it would take about seven years to find diagnosis.

It's going very slowly for us, bv FTD, and my dh is highly functioning. As long as he stays home, leading a very quiet life in which socialization with me is all he seems to need, an occasional trip to the hardware or grocery stores, one other couple we see once or twice a month who are very kind and dear friends, he is content.

Medication controls his issues fairly well. We've learned to ride the bi-polar roller coaster like sailors with sea legs, the ups and downs now a regular way of life, the upsets come in like a storm and pass like the weather and I roll with it. The scaffolding I provide for him feels more natural, and when agitation and anxiety threaten to overwhelm him, I'm grateful he responds well to simple calm reassurance.

Full acceptance of our situation is a moving target for me. Sometimes I'm there. Other times I feel restless, confused, lonely, angry, grief stricken, or lost in an alien landscape once again. I continue to work on becoming totally reliant on only my own company to meet my needs in every aspect, though he is still here. We are housemates who sometimes watch TV together in the evenings. Boredom and inertia haunt me. Guilt, though I know it's futile and unhelpful, guilt that I'm not doing more haunts me. Still, I have learned to live in gratitude, to count my blessings and know how lucky we are.

Fighting depression and boredom which are always lapping at my heels, I think I've become too much of an expert escape artist, diving into mindless past times like online jigsaw puzzles, sumdoku/kenken puzzles, internet "research," webinars. The various meetings and phone calls with friends during the week have come to feel like a pretense, but I continue going through the motions (somewhat) with people who live "normal lives."

I started seeing a dementia/family/grief counselor a couple months ago and it is helpful. At the same time I still feel my world shrinking along with my husband's and sometimes feel like I'm losing myself. I don't know that I'll ever "get" what life lessons I need to learn during this time, to somehow be independent and create a new sort of life even as I stand by my ill husband, feeling myself decline in my own aging process.

But I am putting one foot in front of the other every day. That can be enough for now. The moments of light that inevitably come into each day are all the more bright and precious gifts to savor. In a gray world, even a faint whispering taste of joy can hold the full wonder of satisfaction.

Mint

Nice to hear from you Storycrafter.  ((())).  Share some of these same feelings.

M1

I too am glad to hear from you and read your post with interest and compassion.  I was just thinking to myself yesterday how long I can go on like this, being mostly to myself, seeing so few other people, remembering a childhood fantasy of whether I could be completely self-sufficient even if I were in prison (which things sometimes felt like, then and now).  Our local gardening show quotes Cicero:  If you have a garden and a library, you have everything you need.

My heart goes out to you, dealing with bv FTD.  And being the sole caregiver.  

I am glad you have the one couple.  We did, too, and they continue to visit my partner in MC, they are the only ones who do.  But I never see them any more, our friendship seems to have unraveled since my partner and I are no longer living under the same roof.  Nonetheless, they are doing me a tremendous service by visiting her, since I cannot.

And I am glad you have your counselor.  Do you have any other help at home, so that you can get out for yourself now and then?  It's very hard to know how to build any independent life in these circumstances.  

I'm very glad you posted, please continue to do so when you feel like it.

nancyj194

Hi storycrafter, I could have written most of what you said, myself. In fact as I read it, I thought, did I write that? No, it is someone else on a very similar journey. 

The middle part drifted away, then it came back again to what my life is, now. 

I liked M1's quote from Cicero, which at this point is what keeps me going. 

NG

loveskitties

Dear Storycrafter,

I cannot begin to imagine the journey you and your DH have been on for so long.

Having a counselor is a good step.  Have you looked into any virtual groups of folks in your circumstance?  Some times just being able to directly communicate with those walking the same path is helpful...not with answers, but just knowing others feel as you do.

Isolation is a strange animal...when self imposed it can give a feeling of safety...when imposed due to outside circumstances it can be a prison. 

 I know for myself, with winter snow, I always have to keep the driveway cleared and the car cleaned off...even though I do not travel in that type of weather...but knowing I can if I want to or need to brings peace.

During the worst of the pandemic, the isolation was scary and depressing...total loss of control over my abilities with the outside world.

It sounds as if you and your DH are currently managing his care.  Is it possible for you to find a companion for you to come in once or twice a week?  Perhaps someone who has had a family member with dementia...who would understand your circumstances and needs for interaction with others who 'get it'.

Most times here, it is help for the caring needs of the LO, but all should remember that the caregiver has their own needs which need boosting as well.

Please write as you can, or when you need to reach out.

Newbernian

T hank you for your story, "Storycrafter".  I don't visit often.  Especially lately.

My life has become like yours.  That is why I came onto the forum today, I needed to be with others who are going through this.

My DH has recently, last few weeks, deteriorated rapidly.  I guess the drugs stopped working.  He cuts yards for people in our small community.  He took on a new customer last week and had a major problem with his mower.  He stayed there almost 8 hours trying to get the job done.  I received a post from the woman on Facebook which seemed sarcastic.  But I swallowed my pride, apologized, tried to explain the mower problem and offered a free yard clean-up or money return, her choice.  I received a response this AM which was less then compassionate.  It hurt's.  I have 2 pets that are ill. I can't afford to pay for proper Vet care and the pets are old.  As am I.  I spent 4 hours everyday this week on the garage floor helping DH repair the tractor.  I have a bad back and knees which does not help.  Whenever anyone has a problem with his work, I am the one they contact. I feel overwhelmed and alone.  I talked to 2 old friends this week, the one had passed a year ago, suddenly from cancer.  Her husband told me the story.  The other friend's husband has had liver cancer and went through aggressive treatment that ended 2 months ago. This weeks blood test showed the cancer returned.  I also discovered a colony of bats in my attic.  Yes, I am overwhelmed but it helps to hear your story and know I am not alone in my loneliness.

Faith,Hope,Love

Hi Storycrafter.  My heart goes out to you.  I too share some of your feelings.  There are days I handle this very well and days I just don't.  I'm trying to learn to give myself grace no matter what the day brings, because I'm doing the best I can (even if I don't always think so). If you like reading, maybe an online book club could help.  Our local library has one that's free.  They read a book every two to three months so there's no pressure to read quickly.  There's a moderator that asks questions relevant to the book and posts articles that are relevant to stimulate a discussion.  It's a nice way to escape for a little bit.  For me, I find it helpful if I stay busy with projects, hobbies, etc.

Paris20

I identify with all these posts. My DH was diagnosed with AD but showed signs well before then. It’s been a long journey that continues. My husband had a stroke so now he is in a skilled nursing facility. It’s like a B&B only more expensive and more depressing. My husband thinks he’s at home, until I have to leave. He seems confused, asking where I’m going. I always tell him I have to walk the dog. The dog has incurable cancer but I will not tell my husband when I have to have her put down. He loves her more than anyone else, human or canine.

As for me, my life is very narrow and routine. I’m fixing up some home projects DH neglected as his illness worsened, calling contractors to do what my husband would have done years ago. I’ve learned to accept that as part of my current life. I visit DH most mornings, come home, catch up on emails and texts, read, cook occasionally, and try to chill out. I check in with my mother’s aide each day. Mom is 100, on Hospice. I expect “the call” at any time. I think that the only way to get through this is to accept it. Once I knew that friendships would thin out, that my husband is never coming home, that my mother will soon be gone, as will my beloved beagle, I just tried to make peace with what is. That attitude enables me to get through each day.

MaryG123

You write beautifully Storyteller, and I can relate to so much of what you describe.  Thank you, and here’s a virtual hug.  O

LosAngeles

That's a lot to deal with. 

About the pets, there are some programs that help seniors keep their senior pets and some offer options for assistance with veterinary care.

This website lists a number of programs: www.keepyourpet.com/vet-care-assistance/

Gray Muzzle also has assistance programs: graymuzzlesociety.org/assistance-programs

RickM

“In a gray world, even a faint whispering taste of joy can hold the full wonder of satisfaction”

That’s what I hope for each day

Best wishes to you and your loved one

Dutiful One

Storycrafter,

Count me in as one who can relate to your post. My first thought was, "Wow, I could have written that!" Your words described the past, present, and likely future living with this. 

This weekend has been rough. I was glad to come here and read such affirming words. I'm just sorry others are going through the same things.