Mourning what this disease has taken

Sarai

Does anyone else have days when you are almost immobilized by sadness? DH still lives at home but it is like being alone. The only thing he seems to enjoy is eating.  Other than that he sleeps.  Today I  am angry and sad. Does anyone else ever feel like this

June45

Sarai wrote:

Does anyone else have days when you are almost immobilized by sadness? ... Does anyone else ever feel like this

Every single day...

Ed1937

Not yet, but it's probably in my future.

Joydean

Most days yes! When I ask husband to do just simply things, his reply is “you do it better “. Then he just waits for me to wait on him. There are things he can still do, very few, but some. I’m torn from wanting to cry or scream! Yet I do neither.

Sarai

Thank you for reaching out and validating my feelings.  Bless you.

Paris20

Yes, there are times when I feel sad. Those moments happen when I think about what my life used to be and what it is now. I’d be planning my next trip to France, making sure to prepare a list of what to take with me, keeping the suitcase below 50 pounds. I became so good at it that I could pack 50 pounds within .1 lbs. I’d be going to my aerobic dance classes every weekday, having lunch with friends, shop at Wegman’s, dine out with my husband and look forward to our next visit with kids and grandkids.

I’ve accepted the fact that those are beautiful memories. I’m taking my husband’s aide to WalMart for her Moderna Booster. I can no longer leave DH at home. Therefore, while we wait for her to get her shot, I’ll be watching my husband the way I watched my children when they were toddlers in a store, constant monitoring. There will be no shopping. I can only hope there will be no toilet accidents, which seem to happen when he leaves home. So, yes, I am sad. My goal each day is not to create a pity party.

Marie58

Yup, every day. Especially the past two weeks since my DH's sudden decline. I think there's no tears left, and then the flood gates open. We're all grieving losses of our LO, one at a time, and there seems to be no end to the losses and heartbreak. Blessings everyone.

Rescue mom

To answer Sarai question, short version: yes, regularly. As someone said, my goal is not to have a pity party with just me.

I so miss just conversation, just the small talk, little back-and-forth comments we used to have. I do have friends and family nearby I could go see, if I can leave for a minute….His body is here, just unable to converse. 

He hates being around other people. If people come here, he will go in another room. He used to be so social, the guy who made the party. 

He also sleeps a lot. He did watch some football, but didn’t really know what was going on…if there’s anything he wants to do, I have not been able to find it. If I ask him to do something, he’s most likeLy to just look at me and walk away. Occasionally he’ll say ok, then walk away. Pretty sure he forgets what I said almost immediately.

Jeff86

I don’t experience anger, but I feel heartbroken every day.  When I see how reduced by DW is, I feel overwhelming loss. It takes an effort of will to note and celebrate those moments where my DW seems to still experience pleasure or joy.  And I do make the effort.  But the scale is not balanced….

Arrowhead

I keep a journal about my wife and her disease. This is one of my entries: 

December 2, 2020

I mentioned to my son, Patrick, today: “I want my Mommy. I want her to tell me, ‘Don’t worry, Ronnie. She’ll be alright.’” I said it jokingly, but as I’m recording this, I’m taking it seriously. I guess I need assurances from someone that she will be alright. My mind knows it, but my heart still worries about her. I take emotional strain very well, but sometimes it just becomes too great. While writing this, the strain broke me and I started to cry. It’s not only about what’s happening to her. It’s also about what it’s doing to me. As the song says, “I will survive.” But it won’t be easy.

Crushed

In 2010, my lovely brilliant dedicated wife had just been appointed to the top position in her medical field in the Federal government.  It capped her extraordinary career.  Our younger daughter was getting married. After 30 years of endless hard work there would finally be time for us. I joked with her about being in her office on Christmas day to  keep the systems running for patients.  There would be a victory lap with awards and celebrations.  

Then my summa *$%& laud in math  could not add up a column of figures and the world came crashing down.  Seven years of decline where I did everything I could to give her a life.  Then psychosis and total loss of memory took her away.  She has been four years in memory care. 

What don't I mourn?  

Diem

Yes.  I’m going through a particularly hard time right now, as the holidays are getting started and I know all the work that goes into celebrating them will be done by me.  My husband used to help me, but now he spends his days reading the paper for hours and watching television.  He can’t work the remote, so when a soap opera comes on, I go over and help him find another channel.  Our kids and other family members came over for Thanksgiving and the change in routine and all the noise and laughter irritated my husband instead of making him happy, and he ended up shouting at everyone and then sulking for the rest of the evening.  I know how lucky I am to have such a wonderful family and yet I am so sad about my husband’s decline.

A. Marie

Sarai and everyone else, I hear you. Oh, boy, do I hear you. 

I placed my DH in an SNF in June, and although I knew that things would get harder as the holidays and our Upstate NY winter came on, I didn't know how hard. And although I have a "compassionate care" exception (as defined by the NY State Health Dept.) so that I can keep visiting through the ever-changing COVID restrictions, it is still so damned hard to keep going in and find his marbles continuing to hit the floor one by one. The latest is that he can no longer feed himself. I came in the other day in time to feed him his lunch, and although we didn't spill too much on the floor, he did try to eat his napkin. Sigh.

On top of this, a 34-year-old niece has just been diagnosed with lymphoma--and I have no one to share this new grief with, or any of the ones that have been piling up over the past few years. We have no children, and although my neighbors are wonderful, I can't be Debbie Downer for them all the time. 

Anyway, thanks for listening. And thanks to everybody on this forum for being here. I lurk more often than I post, but even lurking has kept me from going off the deep end a lot more than once.

Whyzit

My DH sleeps excessively too and lately watches football for maybe 15 minutes max. I’m just thinking maybe he can’t keep up with the fast pace of the game. He focuses on the players’ hair length, tattoos and race rather than the games. Then it is back to bed. 

The same thing is happening with the church services we watch. As long as the music is on he is fine. Once the sermon has begun, he exits and goes to bed. Hmmmm, now that I think about it, he does the same thing with wheel of fortune. He is good at figuring out the words but reaches a point around 10 - 15 minutes into the show where he just exits and goes to bed. I’m definitely seeing a pattern here.

It is a lonesome marriage now with very little back and forth conversation. I’ve been through the overwhelming sadness part……several times. Now I’m trying to occupy myself with worthwhile endeavors. It helps.

My heart goes out to all of you.

Buggsroo

A couple of days ago my husband and I had an argument. He called me a douchebag, that sent me into a barely contained rage. I made his dinner and then went and escaped down the basement. I was really hurt by him calling me that. Usually I can shake it off and blame it on the disease, not this time. Every time I dealt with him, I was cool and polite.

Luckily I was able to talk to my mother, she helped me a lot. So did journaling, it took me a few days of depression before I felt myself again. I find if I stay in the moment, I am ok. As soon as I think of travelling, getting on with my life, the sadness sets in. 

Caregivers are often overwhelmed, angry, sad, wistful etc. We are on the frontlines.

CStrope

I have so many different emotions every day, but the persistent one is sadness.  When someone stops or calls and asks how DH is, I give a short report.  Then when they ask how I am, I find myself telling them that I am just so sad.  I try to follow it up with the fact that I'm not depressed, in the way that would require psychological attention, I'm just really sad about what my life has become and what it will be for the future.

Pat6177

I have been so sad this weekend. We needed a new tv and my husband finally said that he agreed that we needed one. We discussed what we were going to get, size, brand etc. He wasn’t pleased that I was buying it online or that we were going to have to set it up ourselves. But he knew every step I took and why. When the tv got here, he was upset with me. He forgot that we had discussed it and was upset with me for not involving him. I realize that set up was frustrating for him and he knew at some level that it was beyond him and he was lashing out at me. Not bad but he said to me in disgust “You’re a changed woman”. Sadly, he feels I have changed, not him. The fact that he couldn’t help other than to physically move it, his anxiety level, that his memory is so short now, his badgering - asking what I was doing each step of the way, asking why and how I knew to do it and starting the questions all over again. And all the little things that he forgot this weekend like where the cereal is. Maybe due to the anxiety around the tv. I hope so. He is calmer this evening and thinks maybe the tv is ok now that it’s all set up. But I feel like he’s dropped a level and a significant part of him is gone. Yes, I knew this would happen but it’s sad, so sad. Thanks for listening.

Kibbee

I'm not feeling sad, but I do worry quite a bit about the unknown future.  How much worse is he going to get?  How long is this going to go on?  Will I be able to continue to manage him on my own?  Some things that trigger this worry ... His increasing unsteadiness and difficulty transitioning to and from the wheelchair.  The stress of trying to monitor every move so that he doesn't fall, but unfortunately he still falls from time to time.  The fumble with the urinal or miscalculation at the toilet and the resulting need to help him change into clean dry clothes, then change sheets and wash another load of laundry.  His increasing lack of personhood .. there's no there there anymore.

I have a friend who recently experienced caregiving as she helped her boyfriend through the last 4 weeks of his life due to prostate cancer.  And another friend who provided caregiving to her son who died of brain cancer, and who now faces more caregiving as her husband has just been diagnosed with pancreatic cancer with mets to the brain and lungs.  My heart goes out to both of them.  But in their cases there was / is a timeline with a pretty well defined expectation of the disease progression, there were many resources available (ie in-home hospice care) and their friends and family rallied round to provide support during these short-term crisis periods.  In contrast I've been doing this caregiving dance with my husband for years.  It's been a slow and steady downward spiral with no clear idea of what to expect in terms of the disease progression of Major Neurocognitive Disorder, and no one perceives it as a crisis so no help is on offer.  Frankly I'm at the point where a defined end of life timeline would at least relieve the worry and stress of wondering ... How bad? How long? Can I cope?

mrahope

I have been struggling with being sad recently, too.  My spouse is 13 years older than I am, and diagnosed over a year ago with Mild Cognitive Impairment.  Lately, he seems to be having more and more explosive, angry outbursts.  He also seems to lack the "filters" that tell most of us what's appropriate in a given situation.  He comes from a country where elders are very respected and tries to function as the "kingpin" of our family.  Unfortunately, he tried to force our two adult children to get along by yelling at DS this Thanksgiving weekend.  It was awful. He finally realized what he'd done and apologized to DS and DIL.  I had to help him write apology texts to both of them.  All this despite the fact that in his working life he was a Ph.D. psychologist.

This kind of turmoil exhausts me.  He begged my forgiveness, too.  I told him that of course I forgave him, but please to never do that again.  I got sad because he used to be so good with people and honestly, there is no guarantee he won't explode in rage again at me, the kids, or someone else. (He recently did it to our family doc when he was kept waiting).

The person who had empathy is almost completely gone.  He was such a good listener in former times.  He was the one I turned to for advice.  I am not a tearful person, and cry rarely, but him causing all these problems broke through my defenses.

So, yes, there is just a lot of sadness in my life right now, too.

Leiasnana

I often feel that way. I hate it, and I end up feeling like I am failing at caregiving because it is so hard to be patient.

We don't even have a definitive diagnosis, but he clearly is in some stage of some sort of dementia. Recently we had 3 really good weeks, and since then it has all fallen apart. And I am grieving those few weeks and want them back!

He asks questions that don't make sense, tells me he discovered something during the night but cannot express what that is, spends a lot of time in bed but gets up in the middle of the night, showers, and dresses and refuses to believe it is 1 a.m. I tell him something and he can't even remember it for 10 minutes without asking me about it and becoming confused.

Currently I am wondering if I need to move my daughter and family in with us to help me, but they have 2 dogs, and that is a concern for DH. 

When does one know when extra help is needed?

ButterflyWings

Yes, Sarai. There is a growing heaviness and sadness mixed with anxiety that seems to be with me now. More and more. It seems to be increasing as my DH (6d) declines.

I knew that I was just numb, in shock, for at least the first 2 years after diagnosis. Not in denial at all-  but it felt almost like I was having an out of body experience, going through the many urgent motions that this horrible disease demands. Then the bubble broke without warning last year and tears just started flowing out of nowhere (in the middle of viewing an uplifting cultural arts performance online actually —.not related to AD or my DH at all!)

Ever since and especially now, as you say, I am deeply aware of the growing sadness and a sense of dread, every day. We have to work to keep our spirits up despite the tragic circumstances. This forum helps me a lot. I am praying to outlive my DH. I can tell you though, That I’m sure I will never be the same.

Yorklady53

Every.single.day! I am either angry, sad, or both every day. I am not a person who cries often so anger seems to rapidly take the place of my sadness.

I am so sick and tired of every single part of this hell. Since April, I’ve had to sell his antique cars plus his newer vehicles, move us into a property I bought for us twelve years ago in anticipation that someday one of us would need a one level home, remodel the said home to be our age in place home. I will be wrapping up business affairs of two small biz entities we have by the end of the year. Sell our beloved home of twenty five years. I pre signed our papers yesterday and the buyer will own the property this coming Monday afternoon. Today I’ll have to take DH along with me to our old home to clean all the leaves and mess that the movers left in their wake. All of this in addition to being full time care giver.

It’s so sad to see this talented man who had so many interests waste away on a chair watching t.v. He doesn’t talk more than a few words at a time and the only thing he looks forward to is food. I can’t get him interested in anything. He is a member of many car related clubs and he barely even glances at the monthly publications. He no longer pets our dog or even acknowledges him and I know it hurts our poor boy that his friend ignores him.

So yes I am overwhelmingly sad, angry, and absolutely tired to the very depth of my soul. I know that I will have to place him in a facility soon as he is so difficult to handle at this stage and that is something that will be heartbreaking.

Stuck in the middle

I'm usually pretty cheerful, but we were in a cafe last night and I watched an old man hobble out on his cane.  His wife helped him into the passenger's seat and drove away.  Another car pulled into the handicapped space they had vacated, and another old man got out of the passenger's seat with a walker.  His wife went ahead to hold the door for him.  I used to think "That will be me someday" when I saw men like that, but last night I thought "No, it won't."

Sarai

Yorklady,

The only thing my husband looks forward to is food as well. He has lost interest in everything else. He sleeps 21 hours a day, and just gets up to eat 2 meals. He likes to eat the same things. Then he goes back to bed. He also doesn't talk much. This has been such a rapid decline. He was a functioning adult in May. 

billS

I certainly feel sadness every day as my life partner of 45 years drifts further away. I also feel fear of what the future holds, anxiety over when to place her in memory care, guilt when I lose patience and raise my voice at her, and more guilt when I find myself looking forward to having her in MC so I can finally get a full night's sleep and have my life back.

There, I said it. She is going downhill fast and I want to be free of the constant irritations and interruptions, I don't want to find her urine filled Depends sitting on the kitchen counter, I want to have my freedom to go visit friends, and just to work around my property without having to keep checking that she might throw away important paperwork or wander off down the road if I forget to lock the gate. I want to feel certainty that I will know it's the right time to place her, and not be second guessing myself. But I don't expect certainty, I'll just have to wing it as best I can.

CStrope

Bill, nothing to feel guilty about.  I think we've all had similar feelings at some point.  I'm fairly early in this journey, and a lot of days I already feel like you do.  Today was one of those days.  I thought a nice outing to go have a burger somewhere would be nice, but DH refused to go.  He said there was no reason for us to leave the house.  2 hours later when he asked me why I was being so quiet I was honest and told him I was upset that he didn't want to go out to lunch.  He of course got extremely defensive and angry with me.  Stated that he never said he didn't want to go, accused me of being so mean,...yada yada yada.  So of course now I was sad, upset, and feeling guilty for getting angry with him.

It's a vicious cycle......and so it goes