Those things we talked about before the big D.

toolbeltexpert

I am gonna share about some of the things that my dw and I had talked about several times before the big D, and I don't mean divorce or Dallas. Things that probably a lot of long term couple eventually talk about.

We had discussed what would we do if either one was suddenly disabled and needing long term care unable to live life to our fullest. I am sure that in our conversations the big d never entered our minds, it was probably more along the lines of a stroke or sudden death. I would want my dw to carry on,move on,live on, move if you have to, sell what you want, LIVE LIFE. 

I really never thought I would ever be in that place. But here I am!

I have a very regimented day. Up before dawn, I pray every day for an hour unless I get up late. Do some chores, eat, load up and off to see dw.

More and more she doesn't know our relationship, that we are married 44 yrs asks if i am married more and more, she doesn't call me by any name anymore I know it's the disease and it probably would have progressed much more if I wasn't there every day. 

I had gotten pretty depressed,maybe seasonal? But I started losing some more weight again and was becoming very unhappy. I know it's up to me to move on, accept what is and start looking forward again. 

My house hasn't sold, no hits at all just inquiries. So I dropped the price on the recommendation of the realtor and my own. 

I had priced it too high.

I still want to live and continue caring for my dw, but and you knew that but was coming! I need to have a companion, someone to share life together with. I remembered those talks we had, so I am out and about looking for a friend, this sounds so terrible to write this, but it is where I am at. 

Many on the forum have brought up this topic and probably covered everything I am saying and feeling.

LET ME BE CLEAR I am not trying to justify my decisions, it is just the lot we have to live. 

 I am thankful for all the connections I have here on the forum and it has been a life saver. 

Not everybody is gonna agree one way or the other, but those conversations dw and I had were sincere and ours alone.

I will always be there for my dw. Just a side note, her Lexapro dose was changed and it does seem to be doing its job, lots less crying and anxiety. 

Stewart

Ed1937

Stewart, I know exactly where you are coming from, and there's nothing wrong with that. The good Lord made us all human beings, and that's exactly what we are. We all need someone to love us during our life on earth, and we need company. 

My wife and I had the same conversation, and I knew exactly what her wishes were for both of us. You have done an outstanding job as caregiver.

Rennbird

As a wife, I was not the least bit interested in starting another relationship while my husband was in care.  There was no way I could have dealt with the additional complications.  I was running on empty and had nothing to give to another person.  On the other hand, each person must follow their own conscience and I wish you the very best.  If the situation had been reversed and I was the person with Alzheimer’s, I would have wanted my husband to do what was best for him, while still supporting me.  I hope you find a good friend.

Quilting brings calm

I’m going to make the same comment I made to Virgil several months ago.  There are all manner of friends.  Start slow.  Find organizations that do things you care about.  Join a hobby group.  If you meet someone that you want to do things  with outside of those groups, then ask.  You might meet people who want friendly companionship but nothing more.  That’s a good way to start.  

However, I’m not sure you have the spare time you think you do to start a new relationship.  You  are spending several hours every day going to/from or with your wife and then hours a day  around your acreage.  I still think you should visit your wife fewer times a week and more time doing things you like.  Your mood will improve. 

Joydean

Steward I believe you have to do what ever your heart tells you to do. Knowing you I’m sure you have spent hours praying about this. God never leads us in the wrong direction! Every one needs friends! Best of luck to you. 

MaryG123

Hugs to you Stewart!   (()). You’re amazing!

Joe C.

Stewart, I certainly understand your feelings. Right now I’m cuddled up with my pooch in front of the fireplace reading these ALZ post & the dog is not much for conversations unless I break out some snacks

Jeff86

Stewart —. 

Only fellow spouse/partner caregivers can truly understand the depths of loneliness we experience on our LOs’ dementia journey.  Each of us has to decide how to deal with it, and for some that could include finding a special friend.

Not sure how I will deal with it, but I am 100% sure my DW would not want me to be without companionship the rest of my life.

Do what you need to to survive this terrible disease.

CStrope

I wish my DH and I had discussed what our futures could/would look like after one of us passes.  He was never one to share his feelings or views on emotional topics.  I have no idea how he would feel about my life after he's gone, heck I don't even know how he feels about having Alzheimer's.  That is one of my biggest regrets along this journey, the conversations that we never had.

toolbeltexpert

As I read your replies I find nothing but support no matter what everyone said, and many of you have been here for me at other times, I want to express my deep felt gratitude to you all.

Qbc your advice is good, and this morning I left after 2 hrs and didn't go back. I had been very active in volunteering, I love mission work. 

A  big plus was I got something done. I emptied the freezer in my garage.  Hundred of pounds of food all bad because it was out of date big time. Now it is empty and listed online for sale, my light bill will be much better as well. 

I talked briefly with our pastor about what I have discussed, and he told me he would connect back with me.

I really want my smile back and I am gonna keep at finding a way to do that while still caring for my wife. 

Thank you all for not jumping to any conclusions about my intentions, I can envision having a coffee meetup with someone who is needing companionship, I would really enjoy having a meal and just having some conversation that went somewhere again. 

Physical intimacy was a big part of our marriage for me that I miss as well. There was someone on here who had asked if 7 years of celibacy was long enough?  6 months  yesterday is how long dw has been gone from home.  Seems like forever...  

This topic comes up from time to time I guess it was my time to share.

I do pray every day for so many on here, my forum family.

Stewart

rlpete

Stewart, 

I don't think anyone can criticize anyone for managing the best they can through the big D. For me it isn't the physical as much as the mental. My wife and I used to spend several hours at dinner just talking about stuff. It didn't matter what it was, it was just fun and a big part of our day. Now during dinner I want to start looking at my phone for something interesting. 

I miss the mental simulation. We don't have much support other than in emergencies. Not many people to drop by and just talk. Unfortunately my wife's best friend who used to stop by has been dealing with some long COVID type symptoms so we haven't seen her much lately. My family is too far away to visit but I do talk with my sister regularly. I miss being mentally challenged. 

I am on some online boards for some areas of interest but it isn't the same as the back and forth of conversation. My wife is not as far along the journey as many here. She was diagnosed with mixed dementia so the stages aren't really applicable. We don't know the progression or how long it will go. She is still a joy. She smiles at me. Tells me I'm cute and she loves me. I love her so much but I miss the mental simulation.

Anyway, sorry to hijack your thread. I come on the board here occasionally and find something that really hits home and I comment. I can't be here regularly as I need to find ways to detach from the situation. 

Back to your situation. Do what you need to do to live your life. People need to find their own happiness. As long as you are open with whoever you might meet, I say do it and be happy. My wife has said the same thing to me if/when something happens. You don't have forever and having two close friends die in the past year both under 70, I feel that clock more than ever. Be happy.   

toolbeltexpert

Rlpete no worries I think we all "HIJACK" threads it is what it is. And I miss that same conversation, there definitely is something about sharing a meal. Eating alone is like "eating to live" and a share meal is like a banquet complete with all the best foods.

There is going to be a church community meal next Monday and I have been to it b4 with dw. I am going just for that fellowship, I wish they did that more often.

Side note

One thing I have started doing to combat depression is writing down all the things I accomplish each day, it helps me overcome that overwhelming feeling of so much needing to be done. I used to do so much everyday and had gotten behind in so many things. 

Hoot619

WE can't isolate, we have to be among friends. I go to SR. Citizens' lunch ,we have it 3 times a week still getting to know the others. I live near a small town 2 miles away as the crow flies.

Jan and I never talked to much about anything and boy am I kicking my butt about that. There is a lot that I failed at but have to forgive myself for it. 

I go to 5 meetings a week for the other problem I have and the people there are so much like everyone on here. They care and share.

With just me and the dog it does get a bit lonely. I have a old goat like me I'm 80 and he's 83 over for supper usually at least once a week

It's been 4 months now since Jan passed and I miss her so much. The last 2 years have been fading away and I'm remembering the better times when she was ok.

toolbeltexpert

Ken it's good to hear from you. I can't wait for that church meal next week. I had an unexpected visit from some church family from our sister church. His wife used to do the placements from a local hospital. She was very knowledgeable about all the red tape. She called showtiming, fluff talk. They were very empathetic.

They visited for an hour that was a big help for me.

We have a senior center and they have meals. I might have to check them out again, but with so much to do I find I don't take time for me. I am trying to change that. The last week I have curtailed my visitation time to a couple hours once a day. It's making a difference in me getting our property back in shape. I find those visual differences helpful in seeing the progress I am making. Everyday is a new day. 

Thanks Ken. 

JiminTexas

rlpete;

Just joined the forum and read your message.  Wanted to let you know that I too am missing the mental stimulation.  My DW and I stayed very involved in the news and political and cultural situations.  Talked about issues constantly.  Now in the last couple of years I see her ability to connect thoughts has slipped.  She can't maintain thought strings.  I read a lot of news from various sources and listen to podcasts in the morning.  I am briming with things to discuss but she no longer can and, like you, I miss the mental stimulation.

Jim

ElaineD

Dear Toolbeltexpert:

Your name describes my DH.  He would stand before the tool section of every store, considering if there was any tool that he should add to his shop collection.

Before my DH's decline began, I managed the planning for the future.

We have LTC insurance, and that is a financial safety net for our future, which is rapidly arriving.

We both have advanced directives and power of attorney documents drawn up by an attorney.  This information is in a file, and also listed in the financial notebook.

I discussed with our financial advisor whether we needed Trusts to protect our assets when the need for Medicare arises.  He told us that since all of our assets are in pre-tax funds, it would prohibitively expensive to move the money into a Trust.  AND we don't have lots of assets to protect. Whichever of us needs Medicare we can just spend down that individual asset account and apply for Medicare.

There is a notebook with all financial, insurance, and other information, with policy numbers, addresses and who to contact.  I update this yearly.  We do have a financial advisor who manages our investments, and that information is also in the notebook.

I have planned the following over a 5 year period;

Purchase of cremation packages, including sending the urns to the destination of our choice.

Purchase of a plot in my DH's family cemetery in Iowa (we live in NC).  We have discussed sending the urns for interment when the time comes.

Purchase and installation of our headstones (monuments), with engraving except for the D date.

Sale of our house and our move almost four years ago to a Senior Retirement Community.  We are in Independent Living, and there are both Assisted Living and Memory Care facilities on our campus.

I have a file called Death Wishes that has sample newspaper obituary information for both of us, with a list of the publications that can be notified.  I have been told that I should write a sample eulogy for each of us as well.  We both prefer that there be a 'celebration of life' rather than a large funeral.  And we've said that in this file.

When my DH's sister died, they wanted to list her mother's full name in the newspaper notice.  NO ONE in the family of 11 children were sure of their mother's middle name!  Calls were made from coast to coast.  I knew her full name, but no one would listen to an in-law!  

I advise everyone to make these plans now. We do not know the day or the hour when the need will arise for all the above.  And often the 'organizer' for the family is gone, and the remaining spouse has never handled finances or insurance.  Think of this as a gift for those who follow you.

Love, Elaine

toolbeltexpert

Elaine thanks your post is a reminder of the things I have yet to accomplish.  I did the dpoa and we have our headstone set and both funerals are paid,but the obituaries are something I have been contemplating for a while. Having done many funerals you would think it would be done but nooo I procrastinate. A member of one of the churches I served passed away yesterday. They will be celebrating his life you did well in making that clear for those who will lead the services. I still haven't done a will yet, the house is still up for sale but interest rate hikes put the brakes on real estate sales. When that happens I will be moving closer to the mcf and hopefully the sale will be able to finance the cost of the mcf till its over,but there is no telling with any of this.

Where I used to be a maintenance supervisor and wore a toolbelt for 30years I got the nickname toolbelt. I got to buy the tools for hundreds of employees, and since we repaired everything I became an expert on what tools were the best, hence the expert. I also taught many a journeyman how to completely rebuild electric and pneumatic tools.

One time I bought a 1000 dollars worth of tools back in the early 80's that was a lot of money and dw never saw them till the day we moved to Tennessee. Now I have a shop filled and still buy or make them as needed.

Stewart 

Ed1937

ElaineD wrote:

I advise everyone to make these plans now.  Think of this as a gift for those who follow you.

This is really good advice. My funeral is planned and paid for, monument is already placed, as is our marker. The only thing that needs to be added is my death date. One daughter will handle whatever is left, and my kids have access to my insurance policies. I guess about the only thing I could do now is to get rid of whatever would be considered "just stuff".  Thanks, Elaine.

Hoot, I'm glad to see you posting again. I know the loss of your wife is still raw because I'm still having bouts of grieving seven months after my wife passed. But it sounds like your doing what needs to be done for social activity, and I'm glad for you. We all know that's important.