What do you see for yourself post dementia?

Buggsroo

I often think about my life post dementia and what it might look like. I know this for sure, I want to go back to North Africa, Morocco and Tunisia. I also would love to float over Cappadocia in a hot air balloon and see Istanbul. I love Byzantine art and going to Turkey is definitely on my list.

The first week, month and year maybe, sleep in my bed, sprawl on the pillows with no fear of being awakened , shouted at etc. 

I also would like to finish my masters in French and German literature.

 However, I want to heal, heal from the assault on my freedom, confront the thief who stole my husband, well maybe that is dramatic, I just want to be, not having answer to anyone. Yes that’s it, what a great question.

CStrope

I often wonder if what I think I want to do, is what I'll really want to do when that time comes.  I'm still working full time, and will need to for at least a few years.  There were so many things we talked about doing when we were retired, none of which we've done.  I'd like to think that I will get to do some of those things, take those trips, experience all those things we had planned to do as a couple. I don't have a lot to keep me in the small rural town where I live, so I'm open to moving.  I have become friends with another wife through this message board, and I would love to foster that friendship and even travel together.  I feel like when I get to the other side of this I will be different, and having a close friend who gets what I've been through will be priceless.  I got married when I was only 23, and have been married for over 36 years. I have raised 2 wonderful kids, and was always supportive of every thing my DH did.  I look forward to making decisions for myself, to eating popcorn or cereal for supper if I want to and to only have my laundry to do.  I look forward to hopping in the car (or on a plane) and visiting friends and family in other states if I choose to, and I look forward to not having to watch tv shows I don't want to watch, and listening to music I like while dancing around the house.  These are the things I can say that I want to look forward to, and I hope I still feel the same way.........on the other side.

Lynne D

Hi Ed, 

Thanks for the post. It seems like our friends are here rather than having migrated to the "lost someone" board.

I am six weeks into widowhood, and here are my plans:

Grieve in my own way at my own pace, include soul-sucking bouts of crying. I am trying to learn to live with loss and grief rather than suppress it, and to honor my husband my living my life for both of us. My mantra has become the entire poem "I Carry Your Heart" by ee Cummings. 

Staying connected with people; so many offer support. I find I gravitate to people with "scars" - others who have lost someone recently or who have a similar story.

Take care of my body, including yoga and meditation, and getting outside.

Consciously trying to dig up memories of my husband before dementia started stealing him away, and being grateful for what we did have and enjoy together rather than what we missed out on.

Curating the rest of my life: staying curious, practicing humility, being brave, finding purpose. I will not make any major changes or sudden moves.

I never thought I would feel this, but being a widow to this disease is more difficult for me than caregiving was. 

storycrafter

I have no idea how to answer the question, or what I even have to share about it. So, I'll just dive in where I am and see what my fingers 'say.' LOL

Where we are now seems/feels like it will go on forever. (Of course I know better.)  I no longer see anything but a caregiver life that stretches on and on because my husband is physically very robust and his decline has settled into something slow and subtle. I do sometimes wonder what our lives would be like if we were "normal" people with a "normal" retirement. I'm also aware I'm like the frog in the pot of water that gradually comes to a boil and the frog has no clue it's about to meet its demise. The bizarre life we lead is now the norm.

I see two things ... by the time my dh passes from this disease he has, I will have either been long gone from this earth well before him due to natural causes, or, I will be too old and depleted to begin anything new. Already I experience rampant age discrimination in the societal world, so there is no support to look for there. By that time I would probably be in a condition such that I'd need a caregiver and be of no use; no one will look at me twice and I'll fade away into the woodwork someplace. I'm not sad or morose about this; it's just the fact of living in our culture.

What I hope for is that I'd be vital and vibrant and full of energy all my days until the day I die of some catasrophic physical event that takes me instantly without pain and inconvenience to anyone, a massive stroke or heart attack for example. What I hope for is the ability to still live creatively and meaningfully in some way, always growing spiritually. I see what happens as people advance deeply into elderhood and have no illusions about the possibility of escaping what comes. What I hope for is... to always have a grateful and loving heart

Lills

I identify with Lynne D's response of "I never thought I would feel this, but being a widow to this disease is more difficult for me than caregiving was."

It's been almost 7 month's since my sweet DH died but I still don't feel 'me' yet.  I am going through the motions of living by joining a gym,  joining a solo-walking group, booking a trip to Florida for March to see my best friend,  driving to see my siblings in Madison, WI, etc.  

DH's illness was long and I was a 24/7 caregiver.  Certainly, I anticipated his death and knew I'd be sad...but grieving this long and hard has caught me off-guard. I still cry when I talk about him.  

Still waiting to learn what I see for myself post dementia...

Darn it, now I'm sad again.  

Marta

Four years after dementia, I have sold my home of 40 years and built a new one across the country. 

My son, his wife, and I have opened an adult family home for residents with cognitive impairment. My son is the medical director, DIL is the house manager, and I am the on-site NP. My grandchildren are the entertainment. My standard poodle is the house therapy dog. 

During the pandemic, I, too, was a couch potato when not at work. 

Our family opened this AFH in honor of my husband. I’m back to dementia care, but the perspective is totally different. I spent a 48 hour shift at the home last week and it was a joyful experience. 

To all of you still in the trenches, my heart goes out to you all. 

Ed1937

Marta, that is absolutely great!! I wouldn't even have to tour the place to put my LO in it. Thanks for giving back. You are a saint.