30th Anniversary & reflection

JoseyWales

Today is our 30th anniversary, so I thought it was a good time to give an update. 

DH has been in memory care for 16 weeks. He adjusted much easier and faster than I ever expected. About 2 months in, his behaviors there started to get a bit worse and he went for a 10 day stay at a psych hospital for med adjustment. I wish that he'd done that when he was still home, because it would have helped him so much earlier.

He has of course continued to decline. At first there was what I felt was a dramatic decline due to the medicine, but his body has adjusted to that now. He also had a fall about 3 weeks ago, and didn't walk for a couple of days. No bruising, x-rays showed nothing but I think he hurt his back a bit. He's now back up walking like he was before his psych hospital visit. Which is super slow, but at least he's mobile.

I believe he still knows me, but doesn't have any idea who I really am. The last time he used my name was about 6 weeks ago. DS went with me to visit on Father's day. We couldn't tell if DH knew who he was, but then he said DS's name. He smiled each time he looked at DS. That made me happy. 

He speaks, but what he says really makes very little sense. He has the same phrases that he'll use, and there is some meaning to them. He'll usually answer any question you ask with "yes" or "ok". Sometimes he can tell me his first name, but not always. I honestly think that words have lost most meaning for him. I still chatter on when I'm with him. I think he likes the sound of my voice. 

He's progressed to wearing depends, and at times they've saved him from accidents. He still tends to pee on the floor, but he really didn't understand toilets just before I placed him, so that's not surprising. 

Before placement he was pretty much feeding himself, although I would help on occasion. He now needs to be fed. 

 I am still visiting every other day for about 2-3 hours. It's a 40 minute drive one way, so it's a chunk of the day. I've gotten to know the regular staff, and I really like how they all look out for all the residents there. There are about 16 residents in DH's unit, with 3-4 staff members. I'm shocked by how few other visitors I see there. There's a couple who share a room (and never come out) who get visitors every other day. Their children take turns coming to visit. In the nearly 4 months DH has been there, I've seen only 2 other visitors. It just makes my heart so sad. 

 The staff tells me that they can tell that DH really enjoys my visits. They say that he's calmer after I leave and that he's easier to redirect after my visits. On the rare occasion I've not been able to visit for 3 days, they say he starts calling out for me (and his mom and sisters) more. Today, as I was leaving, I told him my usual story about needing to go and do something. I make stuff up - like I need to go get dinner started, I need to go to a meeting, I have to go get groceries, etc. He usually says he'll go with me and I explain how I need him to stay and help the other people who are still there. He agrees and I leave. Today, after I told him I needed to leave, he said Ok, I'll just stay here. I'm glad he's comfortable there.

So that's my update. I know I couldn't have continued to take care of him at home, and I'm at peace with where he's staying. Medicaid has been recently approved, and everything has fallen into place. I'm still working on learning how to live this new life without guilt and regrets, but each day seems to improve a bit. 

I was thinking back to our 25th anniversary, 5 years ago today. We spent the day visiting a town about an hour away, walking through antique stores and little shops, and ate dinner at a nice Mexican restaurant. DS - then 16 years old - came along with us. All day long DH kept asking me if the day was a special day. He just couldn't hold on to the memory of it being our 25th anniversary. We were a bit over a year into his diagnosis, and I was still trying to wrap my head around what was coming. I remember understanding that he couldn't remember the day, but at the same time very sad that he couldn't remember it. Seems like such a long time ago. This disease can really take its time, can't it?

M1

Happy Anniversary Josey.  I'm glad he's adjusted.  Thirty years is a chunk of time.  We're approaching 28 in September, but I usually round it up.

Joydean

Josey, happy anniversary and thank you for sharing your update. Sounds like dh is doing well. You are right, this disease takes so much away from all of us. But we just keep going. Take care. 

Beachfan

Happy memories of past anniversaries is my wish for you.  I am glad DH is settling in and you are slowly getting used to the new pattern of your life.  And you are so right; this disease can really take its time.  Sometimes I am astounded at how long ago DH could do certain things; I think I was so mired in caring for him that I’ve lost track of time.  I think I have learned how to live this new life without guilt or regrets; you will get there, I promise.  But be warned, in place of any guilt or regret, and without warning, there will come fleeting moments of incredible sadness.  There is no end to the destruction this disease wreaks.  Take care.

Ed1937

Josey, a happy anniversary to you. I hope you were able to make something positive of it.

toolbeltexpert

Happy Anniversary Josey. Your reference to Alz taking its time, is so prophetic  in more than one way. Your  dh seems pretty adjusted. And you are  great advocate for him sounds like you've hit all the bases.  When I think about why there are not a lot of visitors, I think of M1, he's bitting at the bit to be with the love of his life but the timing isn't there yet. You have some great memories, that's what we have left.

Pat6177

Happy Anniversary Josie and thanks for the update on your DH. I remember what a difficult time you had this past winter. I guess it proves what several posters have said over the past couple of weeks - Everything passes. Nothing lasts forever - good or bad. I’m glad you’ve had some wins mixed in with the transition issues. 

We celebrated our 30th a few weeks ago. I reminded DH it was coming, I told him to pick out a card when we were in the grocery store - which he was able to do - and he was able to sign it and give it to me on our anniversary. I wonder what will happen next year.

Marie58

Happy anniversary, Josey. I'm glad he's adjusting well and that he seems to enjoy your visits.

 Regarding other visitors, I've thought that often at my DH's MC facility. But then I realized I tend to visit at the same time of day. When I mix it up, or go on the weekends, I sometimes see more visitors. But all in all, I still think most residents don't get a lot of visitors. Another thought I had is that most of the residents are older and many are widows/widowers. I think we as spouses may visit more than a son/daughter might.

Hope your summer is going well, that you're getting some rest, some play time, and some of your projects done. I know how fast summers go for teachers!!

JoseyWales

I really am sorry if what I said about visitors hurt anyone (M1 and Ed, you're top of my list!) I know there are special situations when it's hard to visit. There are a couple of women in the unit with DH that I could see reacting like Ed and M1's spouses have. I know that if it was my parent, and not spouse, there I wouldn't visit nearly as often.

And thanks everyone for the happy wishes. It was a quiet day. 

Jeff86

Thanks for your update, and happy anniversary.  You have had a challenging journey, and it is good read that both your DH and you are making as good an adjustment as possible.

Your post reminds me—I almost need the reminder!—that this Friday will be my and m DW’s 27th anniversary.  Of course, only one of us will remember it.  Then again, only one of us knows that we’re married. 

We’re in the sixth year of this journey.   A lot of time, as you say, and a lot of loss.  

David J

Josey, I just wanted to wish you a happy anniversary. Times may be difficult now, but the weren’t always so. You have so many memories of laughter and good times. You’ll always have Clint Eastwood.  

Dave

toolbeltexpert

Joesy I hope what I posted wasn't insensitive to you or M1.

 Let me say I was the one who had an epiphany here...

During All the years I visited as a pastor at mcff, I had learned who the few regular visitors were. And since I was always  active at the mcf during the holidays as well.. I did see a few of the holiday visitors. It was in them, I could see the pain in the eyes of the real caregiver. Not the staff  But now I "know" what the pain is like.  Back then I used to think I don't have it hard, I get to go home, some caregivers were there all day every day.  What I didn't realize, that most if not all of the caregivers had been thru months or years of 24/7/365 before they had to placed their lo, and now I know.

 I course I am speaking from the other side now.

Let share that there was one couple at a mcf that I visited at least once a week, the dw was the pwd and she was mute. I never heard her say a word ever. When her husband came to visit which always seem to coincide with my normal weekly visit. I'll call him John and his wife Mary. John always held Mary's hand,always! Mary never displayed any emotion, which I also understand now. John's was heart broken and there seemed no way to Fix it.  I still consider John in my prayers. I still carry some burdens from those days, I posted an obituary today. Maria Spiva, I know all her living relatives, she was from the community in the area of one of the churches I served.Let say this for context, the church I served  was 45 miles from my home and the mcf was 30.Maria had told me a lot of the stories that were included in her obituary. I watched her decline all except the last few years.

M1 I am sorry for your situation and I follow your thread cause there are so many similarities in our current situation, except I haven't placed my dw yet. I certainly think your doing a great job.  But I really can't say I know your pain. But I pray for you. And if what I wrote was insensitive again I humbly apologize.

I thought long and hard about whether I should post this.

I find this place to be an open and honest family of friends.   

Quilting brings calm

Josey - Happy Belated anniversary. 

I hadn’t posted to this thread because it was so pertinent to spouses ( which I am not), so I didn’t want to dilute the meaning.  However I wanted to give you a virtual hug and tell you that I didn’t think your comment about a lack of visitors was even an unintended criticism of anyone.  On this board or not.  You just commented on  the reality of things.  My parents are in assisted living. There is a sign in sheet for visitors  at the front door of the building.  There is only a very few names a day on it for 50 apartments.  My parents never get any visitors but me.   And I have severely reduced my visits because my step dad is now triggered by me and takes it out on my mom.   Plus as others have said, many residents have outlived their relatives or their relatives aren’t local.