Our 1 yr anniversary of dw gone from home.

toolbeltexpert

Well I have hit that 1 yr mark since dw went to a geripsych and never came home. The days leading up to that fateful day were for my dw and me stressful beyond anything I could have imagined! The days after were even more stressful. I got sick for 8 days that started a 30 pound weight loss overall which finally seems to have halted at 155-160 just about my ideal weight and now I do not want to gain it back. My knees don't hurt now when fly up a set of stairs, I don't act my age and I have heard it more than once I act like someone who is 45-50. I am 66 now.

I went thru the maze of medical decisions, I have to say here that if it hadn't been for some shared wisdom from so many here, I started to list the folks here who played a part but I was afraid I would forget someone, each of you knows the part you played in my trials. I don't know if I could have been an advocate for my dw. The pasrr document fiasco that went on for weeks, threats that I would have been liable for the extra time she spent there. She got covid in the geripsych that caused another delay. The medicine that caused her blood platelets to drop to almost dangerous levels. 7 weeks in the geripsych.

The Medicaid process that seemed never ending and ultimately made me set my course to get the level of care dw needed.

I ended up chosing a private pay place and and very happy that has worked out. I have spent well over 45k in the last year out of pocket just for private care. I do know that is really a great price, it's just a lot of money for someone who never planed for it.

Putting the farm up for sale last September, then waiting it out till it finally sold in March.

Moving everything to storage by myself and then to a new home and starting all over again the toll it took on my body and mind,wondering if everything could be done, it was truly overwheming to leave home and everything,the place I thought would be where I would die.

I think about why we make these anniversary dates marking great shifts in our life. We just marked our 45th anniversary or should I say, I celebrated it, dw had no recollection of the date.

Almost always anniversaries are good,but as we get older we have more death and loss that begins to outnumber the good anniversaries.

This day I will chose to make it a day to mark the shift towards not only new and exciting shifts, full of hope! as I am the one who has to chose.

I have chosen to find love again while still caring for dw! That is an ongoing thing, keeping God first and dw's care priority in focus. Allowing myself to find a way forward as I constantly grieve the loss of a lifetime of love with dw. I try to walk within the boundaries, that's another story but doing what I will to do and finding a way to do it is another thing.

Love isn't intimate moments that just happen, it's overcoming differences,it's constantly changing us. Love is built, over doing the dishes, enjoying meals, watching the sunrise and set, saying I am sorry, sharing what life has dealt out and how we overcome it and obviously so much more.

So today I still deal with each of my dw's new losses, we are changing meds again due to depression. I still have not missed a day of visiting. Though in the last week or so I only stayed a few hours each day.

I just bought a newer car that has all the newest safety features, it steers and brakes,beeps when I wander out of the lane markings. I am gonna visit family soon with my new car.1200 mile trip one way. I am looking forward to having some fresh seafood in Plymouth Ma. Gonna start the distribution of family stuff, can't get anybody to come get it and I want it gone.

The next year holds its own surprises, loss of language, balance and walking, wheel chair bound maybe?, now it's just a transport thru the facility and who knows what! It also holds planning stuff again, dates with my new friend and looking forward to activities. Long term planning on how I will fund the care as I don't have a lifetime of funds. Living again!

It's hard to capture all the has occurred in the last year, and the boat has set sail on so much, never to come back to the port.

I hope someone finds something helpful in this. I know everyone's journey is different, but similar in so many way. Like so many decisions when caring for a pwd,we have to make those decisions for our own care as well. Thanks if your still reading this you get it.

Stewart

Palmetto Peg

Stewart, your post was so inspiring! You never stop advocating for your DW, but you are also looking out for your best interests, too. I hope when my time comes and my DH is in a care facility that I will be able to take the time to do what I need to, and then begin to rebuild what is now a broken life. We caregivers have to let go of so much we want and need, and when the caregiving is over, it should be our turn to find some happiness again. I wish you the best of luck in your new home and with your new friend!!

Jeanne C.

Thank you for this post, Stewart. I'm glad you're living your life.

Jgirl57

Yes, I have learned from your posts and I appreciate how honest you have been. Enjoy your road trip !

Joe C.

Stewart, I know how painful the first year can be but you have certainly accomplished a great deal and remain a dedicated caregiver & husband. Our journeys post placement are on a similar track as I have chosen to live my life to the fullest while providing DW the best life possible.

BTW, I live in the Plymouth area, feel free to reach out if you wish when your in the area. We could meet up for a lobster roll.

M1

Wish I could join you and Joe and make it a threesome. Miss MA and that wonderful seafood. Safe travels Stewart.

Buggsroo

Hi Stewart

After my husband went into hospital, I got pretty sick, a very bad flu. My feeling was that my body caved after caring for my husband for three years. I am thrilled you are going to travel and eat some great seafood.

I understand how you feel, you have been a real support to your wife and now I hope you will have some time for yourself. I hope you have a great trip and good vibes all round. You deserve it.

Beachfan

Hi Stewart,

I am just totally amazed at all you have done, alone, while still advocating and caring for your DW. You certainly deserve a getaway, a new car, a new home, some peace of mind, self care, a satisfying relationship, and above all, a lobster roll! (We have a Quincy’s here near our summer home at the Jersey ‘shore, but somehow the pictures of Quincy’s lobster rolls that my daughter-in-law sent from the Boston area just look better!)

Yes, you still have hurdles ahead and a mountain to climb, but with your outlook, I’m betting you come out the other side in pretty good shape. Hang in there. A little gratitude goes a long way.

Ed1937

Stewart, I know you had a really rough year, as have a few others here. But you have accomplished a LOT in a short time. It's good to know that you're looking out for Stewart.

FWIW, I like your analogy on love. You hit the nail square on the head with that.

JC5

Stewart your posts have always inspired me to be true to my DH, true to myself, and reminds me to that it’s ok! Tnank you and God Bless

ButterflyWings

Inspiring! Good for you. You are an amazing caregiver and how wonderful that you are working to honor other important aspects of who you are, as best you can. That is what we all deserve, I think. For some it may be reconnecting with talents, dreams, fulfilling outside work, or finally exploring deferred interests or skills they want to develop.

Like most (all?!) of us, I have put "me" on hold for such a long time already. So I am not even imagining connecting with someone other than myself, first, whenever dementia caregiving spares the time and headspace. I am happy that you have found a new friend who also must understand your deep commitment and love for your DW and that is quite special. Enjoy your life TBE. It is the only one we have.

Dio

Stewart, your post is just what I needed. I'm in a very dark place lately. What you have gone through is something I will have to go through, and dreading. But you've accomplished it...this instills hope in me. Thanks.

DJnAZ

Thanks, Stewart, for saying what many of us are feeling. I also just passed a year without my wife and best friend. Following her 9 days of hospitalization in May 2022 for a bad UTI, she was placed directly in a MC facility and never returned home. It is heartbreaking to realize our life together is over and although she is still physically here, that I have lost her forever. I'm encouraged to read that you, like me, are now focused on taking care of ourselves.

Jo C.

Stewart, it is hard to believe that one year has already passed! Think how far you have come since those initial early days buried under SO much "stuff," deeply troubling and overwhelming "stuff,"from dementia, to a house overloaded, to property needing to be dealt with and much, much more.

You have worked by yourself to create order out of chaos and you have done very well. It is a positive that you are finding ways to find joy within your life in a variety of ways; it is healthy to hear that in your voice in comparison to what it was in those very first days you came onto alzconnected. May all continue to go well and that peace and serenity will be yours.

J.

mommafour

Stewart - Your post is such an inspiration to me, after a very hard day with my DH. You definitely deserve all of the good things happening in your life.

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Jeff86

Thanks for this post Stewart. Like many, I have followed your journey and admired your commitment to your DW’s care. And now, I admire your determination to continue honoring and caring for your DW while moving forward with your own life. Keep going!

RickM

Thanks Stewart. I can't really add to what others have said. I'm just grateful for your post.

Best,

Rick

Joydean

Steward, so glad you are starting to get on with living your life. Proud of you for getting yourself a new car, remembering how you were always having to work on your old one. Happy for you that you made the decision to visit your family which you haven’t seen in a long time, enjoy your road trip. You are definitely an inspiration! Peace be with you!

toolbeltexpert

So I want to just up update my trip is in the books i have been back a week. M1 sorry you couldn't join Joe and I, Woods restaurant is still my number 1. Thanks Joe I enjoyed your company and I hope to do a fall trip this year. Fresh seafood is so good.

I actually gained some weight and not really because I ate a lot more, it was the not having the feeling I got from visiting my dw, sounds terrible to say, but it was noticeable for me, that hole in my chest feeling. I called a few days late in the day to check on dw no real changes.

Socialization for me was good, I tasted what life was like again. Like a breath of ocean air.

I have back a week and that hole in the chest is back sometimes, I am just gonna have to limit my visits for my sake right now.

Dw isn't eating much and is getting that blank stare. She didn't acknowledge that I had been gone a week which is something I had expected, but now I know!

To soon to tell if the weight gain is gonna stay, but I believe it's started back down again.

I know that there is little more to gain from my visits, being an advocate seems my primary role now. Dw has been complaining of back pain in her kidney area so it's gonna be another uti check and they did in house xrays of her back. When they rolled her on her left side she cried tears and said her hip hurts real bad. It's do hard to figure what is really causing her pain. May have to do a hip xray?

I have gotten to that point that many have said I can only pray she doesn't have to finish the long drawn out Alzheimers experience. I dread the things that come.

Dio

Stewart, so glad to hear you enjoyed your road trip! I'm so sorry to hear that your wife is going through so much pain. It's just not fair...I know saying this is futile, but that's all that comes to mind. There's only so much we can do to help our LOs. Just don't let this disease take two lives. Take care. Wishing you both all the best.

M1

Welcome back Stewart, I'm glad it was a good trip. Sorry the reality of the return is so difficult. I hope they can alleviate her pain, for sure.

Ed1937

Stewart, it's great that you could get together with Joe, and have a good time. Caregivers need all the good times they can get, that's for sure.

Sorry the rest of your story was not as positive, but she has the best advocate she could have. I wish peace for both of you.