Grieving stages on this rough road

Grandx7

I don’t mean to complain but I feel like I’m alone in our home, but he’s here with me.  No longer am I able to have a meaningful conversation with him as he seems to gloss over my comments and either goes back to watching TV or makes a comment that is completely irrelevant .  We used to discuss all topics but now if I don’t agree with what he says, he’s a very with me. He’s usually angry about something.  He has FTD, VD and AD- real fun trifecta. A piece of him seems to go away every week.  I get asked to help get his clothes, all food- of course- and anything else he may need.  I feel like I am going through Elizabeth Koobler Ross’ stages of death and dying, but he’s still here.  I’ve read tons of info but there is nothing like getting info from those in the trenches.  I appreciate this forum!

Daily, I just do all that is needed in and around the house, bookkeeping, legal info, and never say anything to him about all that I do.  It’s very lonely and I get sad when nothing is even noticed but then I snap out of it and think of the hell that must be taking place in his own mind.

Yesterday, he was very upset because I let one of our grown kids use my car.  He tells me he’s hurt that I don’t let him ever drive it  but I said it’s because he tells me he doesn’t remember how to put it into park, reverse, start or stop the engine and I’m trying to make it easy for him.  I sugar coat it as best as possible, but he is on a roll of not speaking to me- again.  

The house is all decorated in and out but it just is so hard and lonely.  Our grown kids come by daily but as soon as they leave, it’s back to his tv and he’s in his zone.  I pray daily for God to give me the grace to properly navigate this voyage.  We are at about level mid 6 but I’m not sure how that works with FTD.  

Suggestions are appreciated! It’s such a lonely disease inside the house!! Do they feel the loneliness or when is it that the disease takes over so they don’t have sadness ?

SSHarkey

Grandx7, many of us here know exactly how you’re feeling! You may be alone in the house but you’re definitely not alone here in the forum! I share your prayers for grace daily. Without it I’d loose all hope. Thank God for children who come by. One step, one day at a time. It’s a season. And the season will change.

DrinaJGB

I know what you mean and how you feel. Exactly. The grief never resolves because you are reminded on a daily basis what you have lost. Nobody seems to get that.

  A few weeks ago our daughter got angry with me and said I am wasting my life because I did not want to attend a large gathering in fear of my DH possibly getting it.

  Then what? It scares me to death. The reason we are here in the first place is because a virus attacked his brain and we are left now with mixed dementia. Why would I ever risk exposing him to another deadly virus?

It has been months since our daughter even came by. She lives 5 miles down the road. I feel utterly and completely isolated and alone.All she has done is to pile on more grief to deal with now.

 Her anger at me and her comments simply blindsided me. Does she really believe this is the life I want? I have been caregiver to DH going on 12 years now with absolutely no help other than when he had  to have emergency surgery for a hip repair.

This is so hard and such a lonely road to travel, but we have no choice other than to carry on.

Onward through the fog............

Buggsroo

I can relate to the loneliness that is part of having a spouse with dementia. My husband says the same thing over and over. I usually am treated to the same observation over and over. It is disheartening to say the least. 

I am here to make food, do laundry, clean etc. sometimes I feel horribly lonely then I phone my mother, she tries to help but not much she can do. However, I love the fact we have a real conversation. 

I have to agree with my husband and run interference between him and the neighbours, that being when he decides to collect the mail in the nude. Sigh. Hugs to you all. I thank god for this forum, I’d be scuppered without it.

riajean

I'm sorry but thank you for the laugh Buggsroo in my visualizing your husband getting the mail in the nude!!!  Honestly, God bless these guys, right?!

Listen, this is NO easy path.  I gave up on explanations a long time ago.  What's the point?  Nothing is really understood.  We care, we understand, we're used to doing/saying things, explaining, but there is NO need.

My husband was placed in MC in late August after months of agonizing torture on my end wondering if I was abandoning him, doing this for ME and not for HIM and so much more there's no room here to write it.  After seeing him in 2 weeks' time, I was shocked at how sick he looked, wondering if I'd waited too long to place him.

He's not at home but he's still "here" and I miss him terribly and have had to adjust to living "alone" without my DH at my side waiting for me to do absolutely everything for him.  BUT, I'm still alone - like you.  A book found after placing him was just the absolute BEST book I've found with a new term called "ambiguous loss", something that we feel because our dear spouses are still "here" and "alive" but not and we experience more and more loss daily.  They're still here but gone. The book was fantastic and I offer it to everyone on this forum.  It makes sense.  It gives what we're feeling and experiencing "terms" and "meaning" something we all search for.  Unfortunately, it's only available as a download, so if you have Kindle, it's perfect.  Wish they didn't put it out there in such a limited fashion, but here's the title.  I couldn't copy the link for some reason.  It's on Amazon:  "Loving someone who has dementia, how to find hope while coping with stress and grief". 

Yes, we are ALL here to listen and guide, but DO look for this book.  You'll see words you could've written yourself.  It will make so much sense to you.  Enjoy.  My gift.  Merry Christmas to us all - those who "remember and celebrate" and try not to cry (as I'm sure I will) when you deal with your spouses, as I am SURE I will when I visit Christmas Eve.  He knows nothing anymore and it breaks my heart into 10,000 pieces. 

Lcpsurry

My husband is similar to yours. 

Most of the time when i talk to him he doesn’t understand what i am talking about. When he does talk it’s mostly babble and off the wall. He thinks there are cameras and microphones hidden around the house and lives in fear of being caught doing something wrong.

It does get lonely. I am tired all the time. I have to handle everything around here. We moved to an apartment 2 yrs ago when i noticed changes in him. He spent his life fixing things, but started to break things when he tried to do repairs. 

It’s a long, tiring, difficult road. But my husband was always such a kind and mild man that i can’t get angry with him. I mostly just get tired, sad and lonely. 

Josie in Podunk

I was widowed before I met my Handyman.  I operated as a single entity for over 2 years learning to make my own decisions and doing things my own way.  He also was widowed.  And, yet we found each other and began life anew.  We had 10 marvelous years together similar to that you describe before a health incident began to whittle at his mind…a bit here…a bit there…sometimes the return of a bit…but always a bit gone.  This path is so very similar to that of being widowed, only as you say, he is still here…yet not.  And, Imoften am operating just as I did when I was widowed.

I don’t know how far you are on this path, but I know that I spent a full 2 years coming to terms with what is versus what I wish was.  It wasn’t easy…often still is not on a particularly rough patch.  So many times I have had to remind myself that nothing of what he does or does not do is on purpose…that it is the disease that makes a child of him on his worst days or an elderly, confused man on the not so tough.

I do miss the man that he was when his mind was sharp.  I miss the conversations, I miss the ingenuity of his creations and problem solving abilities. I miss the days if travel where I did not have to make all the plans alone and see that they were done.   I miss the days when I did not have to be in charge and make all the important decisions alone.  I still engage him when I can, but usually take the tack of saying this is what I was thinking…are you OK with that.  Sometimes I get a reasonable answer, sometimes a sort of confused look, and on rare occasion an argument when he thinks I have gone ahead without discussing with him.  And, the truth  I often don’t and he never notices.

So, you are right that there is a very close relationship to being widowed when you are the spouse / caregiver of a person with dementia.  And, I believe the book recommendation is a good one as is The 36 Hour Day that our primary care doc recommended.  What ever helps us learn to cope with the situation we find ourselves in and how it changes as the disease progresses.

I certainly do not have all the answers and I can only vouch for what works for me. Rough days of uncertainty and wishing I was anywhere but here still rear up for sure…but, I am getting better at this job of caregiver even so I wish I did not.  I do believe through this website and the helpful people here you will gain useful information for yourself.

CStrope

I am finding it interesting that so far it appears that everyone that has responded and related to this topic are wives with husbands suffering from dementia.  Maybe it was just timing or something.  Anyhow, I agree with the loneliness.  My DH's dementia was classified as Alzheimer's of the logopenic variant, though the doctor has brought up the possibility of FTD also.  Grandx7 I'm interested in the fact that your DH has been diagnosed with both of these and also VD.  We are dealing with atrophy mainly in the left side/language part of the brain, so like many of you, I miss having normal conversations.  This morning, my husband was watching the birds outside and could not say cardinal, or blue bird, but then could easily count how many of them were at the feeders. The functioning of the brain is so amazing.

Since his diagnosis, my employer has graciously allowed me to work from home full time.  While many of my coworkers are complaining about working, I'm thrilled to be able to converse and interact with others for 8+ hours a day.  During the evenings, the lack of conversation can get to me pretty fast.  

Crushed

This is our 5th Christmas with DW in memory care.  It's four years since there was the smallest conversation and over three years since the slightest cognitive interaction.  She eats what I put in her mouth.  She walks, that is all.

More than 11 years on this long lonely road

NylaBlue

Grandx7, I wish I had suggestions to lessen this loneliness, but know that you have many fellow travelers on this road who understand what you’re going through. I miss my husband’s wicked sense of humor, the way we could communicate with just a look, the years of shared history with so many stories that only he and I knew. Now it’s just me and half the time he’s not sure who I am. Did the last 45 years happen? Do I still exist? For now I just try to get through each day and avoid thinking too much about an unknowable future.

RobertsBrown

You people are awesome.

This conversation really resonates with me today.  I sure understand the feelings of loneliness, and I love the term 'ambiguous loss'.

My gal wants to do stuff, and it really matters to her that we have plans to go somewhere in our future.  The problem is, the future to her is a minute away, and i am asked constantly if we are going to go to (whatever) now.  We made plans to go to Yellowstone last summer, and I had 6 months of daily inquiries about going, usually turning to chewing me out for not going as evenings came on.  It wears me down, and rather than get snappy with her when I get tired, I tend to withdraw into work, or bills, or news, or something.  So, as the friction of daily circular discussions slowly heat up, I slowly pull back, just making the distance between us worse, and my isolation more profound.

I am very lonely, and constantly busy, and constantly interacting with someone, all at the same time.

When I post here, I am always in bed next to my sleeping wife.  It's my only significant opportunity to focus and read and write without interruption.

So, yes I totally get where you are.  Every one of you.

You people are awesome.

Jeff86

Count me in as a dues-paying member of the loneliness club.  At times, the feeling is overwhelming. 

And yes, the burden of having to make every decision, from what we’ll eat for lunch to whether we sell the house and move, can also be overwhelming…and reinforce the loneliness, the loss of my best friend and partner in life.

Re:  Pauline Boss, there’s a great interview with her in the New York Times (think it may be behind a paywall) entitled “What if there is no Closure?” 

 https://www.nytimes.com/2021/12/15/magazine/grieving-loss-closure.html

jfkoc

Very interesting. 

"Pauline Boss says, the idea of closure leads us astray. It’s a myth we need to put aside, like the idea we’ve accepted that grief has five linear stages and we come out the other side done with it."

Can there be closure when there is memory? I think not so I think there is no closure to grief. It ebbs and flows along side of us as long as we are alive.

However joy and love also exist without closure as long as we have memories. 

JoseyWales

I appreciate the discussion here today. We're all dealing with this loss, and it's so different from everyone I know in real life. It helps to know I'm not alone. No one in my real life could ever understand what this loss is like.