Here a bit over 6 years now.

JoseyWales

I just noticed my "joined" date is just a little over 6 years ago. I know I visited here and read for at least a year before that, probably a few years. I was convinced DH had dementia years before his diagnosis, while all the doctors we visited continued to say no, it's just stress and depression, he's way too young to even consider dementia. Wish I had been wrong.

I actually joined before this screen name, but lost that log in information.  "JoseyWales" was the name my husband joined with, when he was first diagnosed and he wanted to answer some questions on one of the other boards here. Even at that point, he couldn't quite figure out the boards and respond. I just ended up taking over his name. 

6 years. I have forgotten what life was like before dementia. Today I'm scrapping the old paint off our (my?) 100+ year old shed/mini barn, getting ready to repaint. It's amazing what a person can do when they don't get interrupted every 2 minutes. I'm painting the last side of the shed, that we didn't get to 3 years ago when we repainted the rest of it. The last time we painted, DH helped some, although it was mostly giving directions and then wandering off. Of course this kind of work allows my mind to wander way too much. 

This morning I cleaned out one of his junk drawers. It's hard throwing away his "treasures" that I think are just junk. Each has a memory. I can't save it all, and I don't want to. That doesn't change the feelings when I throw the stuff into the trash.

DH seems to be content in his new home. I'm getting to know the staff more now, and feeling more comfortable when I'm there. 

toolbeltexpert

Jw I was just commenting on how quick time seems to be going.  I bought a little 8x12 garden building for dw, I started doing the repairs. When you talked about how Long it had been since you started painting, I started staining it then months later finished that. I am doing some of the paring down, a little here and there, plastic containers. Plants. But nothing hard yet.

Beachfan

Hi Josey,

I think about you (and several other posters with recently placed or about to be placed LO’s) often.  I am just past 4 years posting, and for the 8 years prior to stumbling upon this forum, I just flew by the seat of my pants.  PCP diagnosed DH with MCI in May, 2010.  Looking back, DH showed signs of Alz/dementia for several years prior.  I was “lucky” in that DH was fairly typical- - no aggression, behavior issues, wandering, delusions, hallucinations; PCP agreed to monitor his progression anecdotally.  DH just faded away little by little, day by day. 

Even though DH was “easy”, I can see how tethered I was while caring for him.  I, too, had forgotten what life was like before dementia.  Now I can come and go with carefree abandon, although I still find myself checking the clock, feeling the need to get home “just in case”.  I am beyond happy to reconnect with the grandkids, attend their activities, cart them around, have them in for sleepovers, and generally spoil them rotten.  Sadly, they were on the back burner for the last several years.  My two oldest grandsons are flying in tomorrow and I will meet them at the ‘shore for a few days.  Our little beach house is torn up since February, getting a new kitchen and master bath; I had to put the “visitors” in a hotel.  I can manage staying in the construction zone alone with a powder room, outside shower, and no kitchen, but it would be impossible with DH.  Getting back to the beach with a good book is a priority for my new lifestyle.  

DH is comfortable and content in his new home as well.  I visit him once a week, mostly chatting with the other residents or the caregivers.  I know he is safe and I am a more pleasant and productive person.  I just wish our “golden years” weren’t quite so tarnished.  Best wishes; I am thinking of you.  

Bill_2001

I wish time was passing quickly LOL. I have been doing this for over 6 1/2 years and it feels like 1,000 years. I didn't join the boards until 2019. I too struggle to remember what my dear wife was like before dementia, as I have not had a real conversation with her since 2015.

I have been slowly getting rid of things too. Things that used to mean something to my dear wife, but no longer mean anything to her. I keep small things that bring a smile to her or to me, or I at least take a picture of the item. I really do not want to deal with all of these things after this is over (is there such a time?). A photograph of her own mother barely rates a reaction from her now. Sigh.

Alas, here we are at the beginning of another Summer. A seventh Summer to forego traveling, eating out, or anything fun. Another Summer that will basically go to waste. What used to be my favorite time of year is now just a stark reminder of what I have lost, and what I can longer participate in. I actually look forward to Winter each year - at least everyone else is stuck at home too, and I don't feel as if I am missing out on anything.

Scooterr

Well I hate to say it and don't mean any disrespect, but  it's good hearing I'm not the only one downsizing. I feel a little better about what I've been doing to. Last month I had sold my wife's high dollar sewing machines and gave away tons of fabric. You know she still hasn't noticed, she at the point of no return now. She loved to sew hours and hours of sewing and she was so good at it. At first I felt so bad for doing it, and now I'm slowly getting rid of things. I guess when this nightmare is over there will be less things I  have to deal with. That's what I keep telling myself.

JoseyWales

Toolbeltexpert - It will feel good to have this project finished. I finished scrapping, and just finished powerwashing it all. Now it just has to dry for a couple of days and then I'll paint. I can't quite blame the long time getting it finished on DH. This side of the shed has a lean-to attached that we fill with firewood (we heat with wood, and stupid electric baseboard heat). Until this year it had a lot of wood in it and access to the whole wall was impossible. I finished using the wood this winter, so I'm painting now and hopefully filling it back up with some more firewood this summer. 

Inside, I started painting our pantry a bit over a year ago, a little at a time. I still need to finish that paint job, too! There are a ton of half finished projects all over. I'm beginning to cross them off my list.

Bill- I feel like the same way you do about the last 2 years. I think I'm only now coming out of the stress of caregiving. With DH in memory care, the stress is different, but still there. I wake at night thinking of what else I can do or should have done. My days now are pretty full and I stay busy. It's the evenings and weekends when I'm feeling pretty alone.

JoseyWales

Beachfan - I don't know what I would have done without this forum in the early stages. I got so much information from everyone here, that really helped me navigate this disease. 

I hope you have a great time at your beach house, and enjoy your grandkids. I love sitting by the water reading a good book - that's my idea of a vacation! 

I don't think there's ever "easy" with this disease. While some of us have had a harder time with our loved ones behaviors, it's just a horrible disease for everyone. 

JoseyWales

I obviously have too much time now that I'm not running after DH all the time. I looked up my old screen name, and found my first posting here. It was 6 years ago. At that time, I said we'd been searching for answers to his memory problem for 7 years.

That means we've been on this road THIRTEEN years. He was 45, I was 41. Our son was just 8 years old. No wonder he says he doesn't really have memories of what his dad was like before the dementia.

Quilting brings calm

Josey - it’s so nice to read  that this week is getting better for you in terms of being motivated. 

I will also have to say that realizing how long you (and others here like Bill and Beachfan) have been dealing with this before and after diagnosis is daunting and depressing.  I knew my Mom was off in some ways for a couple years  before  her crisis in 2019, but I blew that off as due to age, other things such as a bad fall she’d  had in 2013 that took her a while to recover from. Bill - I feel for you and I see my future in your posts. 

It’s now 2 years and 8 months  since  that crisis and she is still in stage 4.  At this rate, there could be many  more years left on her path, even though she is 84.  She could live into her 90s. Her mom did.  She is miserable and I know she would be devastated if she knew how long this could take. I don’t think my step-dad (82) is far behind mom on the path.  Just different symptoms.   I just can’t wrap my head around how long this path is.  Still don’t know how you all have done it and stayed sane.   

You are all still sane, right?  

JoseyWales

Quilting- At times I wonder if I'm sane. I also taught a self-contained classroom for students with emotional disabilities for 6 of the last 8 years. Let's just say there's no way I could be sane after everything I've experienced. I embrace my emotional disabilities, lol.

I've read some of your adventures with your mom and step-dad. Holy smokes. I don't know how you are managing all of that.

Quilting brings calm

Josey- I’m glad you saw the intended humor in my smart-aleck comment. LOL. Retirement is helping to keep me sane since I do find some time to sew and read now.  My back injury this winter and forced inactivity showed me that I didn’t have to go to the assisted living center as often as I had been.   

I’m glad you get to recharge this summer,  you’ve earned it, 

On another front, my spouse got a couple new diagnoses today after the results of his latest sleep study were in.     Although we were told the computer chip shortage could make getting a BPAP machine to replace the CPAP machine take 3 months or more.  Also since Medicare will be primary by then. They might make him repeat the sleep study. When will all of this pandemic/ supply chain, yada yada be behind us? 

jmlarue

It's encouraging to hear that things are going well with your DH post-placement. It sounds like you are finding some peace in your life and time to begin moving forward into the next chapter. Divesting the house of a lot of the "stuff" DH and I accumulated over the years has been more cathartic than depressing. The little things, that always brought back fond memories, seem so pointless now that they only serve to remind me of all that's been lost. Watching DH rummage through one of his many "keepsake" drawers is like watching someone dig through the flotsam at a second-hand store. There's no human connection - no recall of people or past events that were once so important to him. It makes it hard for me to attach any importance to them now, too.

The hardest part for me is that I do remember what life was like before dementia. That's where so much of my resentment comes from. Dementia is a homewrecker and a death by a thousand cuts. It didn't just change my DH, it has changed me and I don't like the person I've become. I sincerely hope I can find my way back to the person who could say, "What next?" with hope, instead of saying "What next?' with absolute dread. This is no way for anyone to live.

Sending best wishes that every day gets better for you.

Joydean

Josey so glad to hear you are getting some projects finished. I have quite a few that I hope someday I will get taken care of. It is a very good feeling when you can finish just one thing. 

I even like to do the mowing and weedeating now and feel like I accomplished something. Being exhausted from physical work is good for me. Dh sits on porch watching.  But it’s all okay. 

Enjoy your projects. 

Paris20

My husband was diagnosed with AD seven years ago, although he had shown signs of decline before that. He had a stroke one month ago so now he is in a specialized nursing unit that is part of an assisted living facility. I started cleaning out our closet to give me something mindless to do. When I looked at my husband’s things in the closet, it hit me that he is never coming home. I’ve been visiting DH every day. I’m going to put this stuff in another closet. I don’t know how long he has and he’ll need winter clothes in a few months. It struck me that my closet work is a metaphor for my husband’s life, our relationship, and my mourning while he is still alive.

Crushed

MCI  2010    EOAD 2012  Came here 2014

A lifetime ago  

toolbeltexpert

Joseywales, funny you mention the wood shed, I did a little splitting, the word I split now will be used in 2024, the wood is right next to my shed and I used my loader to pick up the heavy stuff. Wish I got it done in winter. I don't have a choice termites will find it pretty quick here. Been contemplating going to a gas central, our current unit is 44 years old and does the job but winter and heat pumps are not the best. It is 44 years and last year it blew a capacitor for the fan, I smelt it in the house so I cut the power and fixed next day. That was the first repair that unit has had. I know what you mean about a ton of half finished jobs,my shop is a shambles 2 benches both have a kawasaki 25hp motors both in pieces, I am gonna make one from the two. Someday?

Crushed

Paris20 wrote:

When I looked at my husband’s things in the closet, it hit me that he is never coming home. I’ve been visiting DH every day. I’m going to put this stuff in another closet. I don’t know how long he has and he’ll need winter clothes in a few months. It struck me that my closet work is a metaphor for my husband’s life, our relationship, and my mourning while he is still alive.

It's weird what you keep.  I have all of DW's jewelry, her long dresses and even her "suspender tights" I bought in the UK.  I have her lab coats,  I have the box of contraceptive supplies she used in talks to students.  I have her medical equipment and the computers she built.
I have her collection of tchotchkes 
I have our letters. But I have no photos of her on the walls.  

JoseyWales

Toolbeltexpert - sounds like we live pretty similar lives! I'd love to put in a furnace and be like normal people who just turn up the heat. But the house is about 130 years old and has no ductwork. The electric baseboard heat does a decent job, but can't keep up on really cold days. And we took all baseboard heaters out of the large living room so we could put furniture up against the walls. Like normal people.

We also have no air conditioning, so I have window air conditioners. Which have ruined the windows. I'm about to replace our windows. They're 40 years old, 1 is completely broken and held together with duct tape, others in bad shape and a few in great shape. We don't have a huge house, so not a whole lot of windows and nothing fancy. Still, I'm sure it will be expensive.

Lots more projects to finish that I've put off for the last 3 years, despite DH making me "fix" everything a few years ago that really didn't need to be fixed. Other things I'm glad he pushed me to do. He wanted everything here taken care of so that once he couldn't do it any more I wouldn't need to. Now I think of that fondly.... two years ago I wasn't that fond of his constant repairs.

JoseyWales

Crushed - one of the things I can't get rid of are the rocks. Lots and lots of rocks. More than you can imagine. All around the trees outside, and smaller rocks all over in the house. I've condensed the ones in the house to just the really pretty ones and put them in one of two spots. The ones outside are all around the trees and some now along the house. I should just be getting rid of these rocks, but instead I'm thinking of how to landscape with them, because so much of DH is in that rock collection. 

Stupid rocks.

M1

Josey, I laugh because we have rock collections too.  Lining the flower beds, heart-shaped ones for the pet graves and just because--they are everywhere.  And I remember her with the rocks too.  Planning a trip to the creek to get more for a new project when the tractor is fixed.  Remembering many similar excursions with her.

Like you said, you never know where the memories are going to stick.

toolbeltexpert

Wow JW,M1, The rock thing,I can't believe it's like a dementia ice cream thing. My dw does this too! All the gardens are landscaped with Geodes. We'll be on the four wheeler and she'll yell stop for some rock she's has seen. We have heart shaped ect. The pet cemetery,yes we have a about 20 little markers.