Depressing Realization

ElCy

We are still early on in this horrific journey. Last night I realized that no day in the future will be better, today is as good as it gets and it’s all downhill from here. I’m terrified of the coming years. I’m already depressed and can’t imagine that this feeling will last for years and years and years.

Crushed

I've been on this road for 11 years.  My best advice to everyone is do whatever it takes to keep yourself in one functioning piece. And I mean   WHATEVER IT TAKES

Chess, gardening, church,  cooking, fishing, home care, prayer , pole dancing, pets, singing, scotch , sex with strangers, medicaid,  memory placement,  photo albums,  Even, god help me GOLF. 

Do not worry about what anyone thinks,  least of all your loved one.  

We even have a song I WILL SURVIVE 

https://www.youtube.com/watch?v=gYkACVDFmeg&ab_channel=DiscoMusic  


We are here for you fill in your profile

 
  
  https://www.youtube.com/watch?v=gYkACVDFmeg&ab_channel=DiscoMusic

Buggsroo

I can relate to this post. I can imagine your sadness. 

When I start the hamster wheel kind of thinking, I try to get outside and walk. It seems to snap me out of the disaster rumination. I find just noticing things around me helps. I can’t guarantee this will work for you but it does for me. Deep breathing, journal keeping and exercise are my go too coping mechanisms. 

Crushed is right, do whatever you need to do to keep the sadness and depression manageable.

Gig Harbor

I thought of this about 4 years ago. It is such a sad thought that a good day now is as good as it will get. The other thing I thought of is this: everyone is on this world for a finite number of days and I believe that number of days is known by God. So every good day we have is one less bad day we will have. Who knows if this is the way it will be but it balances the first thought and gives me hope that I will get through this journey.

Quilting brings calm

- Last night I realized that no day in the future will be better, today is as good as it gets and it’s all downhill from here—

Not quite true.  In the early stages, good days randomly pop up.

Medication gets adjusted. Especially anxiety and anti depressants

Those make a great difference. 

Something else that keeps smacking me in the head: you can’t predict the future 

All you can do is handle the short term and plan for the long term, 

Then go follow Crusheds’ advice. Carve out time for yourself or you won’t survive this. 

CStrope

I'm really struggling with the "carve out time for yourself" aspect of caregiving.  My DH gets upset if I even go to the store without him, because since he can no longer drive, he can't go anywhere alone.  Lately he doesn't even want to go out for a bite to eat, he'll say let's just stay home.  

So my question is this, do I force him to get out?  At first I used to make him get involved with life, but lately I've just been appeasing his desire to just hide out at home.  Not sure which is better for him.  I don't want to make him do things that are too uncomfortable, buy I also don't want him to spend years being miserable hiding out at home.  We live in a rural community, so the options are limited.

Ed1937

CStrope wrote:

So my question is this, do I force him to get out?  At first I used to make him get involved with life, but lately I've just been appeasing his desire to just hide out at home.  Not sure which is better for him.  

This is only my opinion, and others might disagree (and that's ok). I wouldn't force him to do anything unless it is something that must be done. I also think your last sentence should say "us", instead of "him". 

sandwichone123

The golden rule of caregiving is that you give your loved one the best care by caring for yourself. If he doesn't want you to go to the store alone, take him with you when you can. If he doesn't want to go out for a bite, then tell him you're going out for lunch when you need to go by yourself.

My philosophy is that I want to make life pleasant for my dh *today*, within the constraints of the golden rule above, so if he doesn't want to go out he doesn't go out. But *you* still have to get out--by hook or by crook--or your go nuts and die first.

Joydean

As I read this thread, all I could see and think about is as caregivers, we have to tiptoe around our loved ones. Yes they are sick, I understand they can’t help most of what they do. I find myself doing what ever my DH wants. Why? Because if I don’t then he will have a fit. Like a spoiled brat. According to him there is nothing wrong with him. I know it’s anosognosia, or whatever.  It’s just been a really hard week! Had to have a plumber out twice, A roofer, then insurance agent, and yes roof replaced, washer started acting up, I worked on that and fixed it. All the time DH is just watching tv, calling me to come change the channel, fix him something to eat! Bad week!

Cherjer

Hi CStrope,

I realize you are in a rural area but is there anyplace or anyone that can help you with caregiving? We live in Huntington Beach, CA so have access to a Alzheimer Family Center as well as caregivers. My husband gets upset when I pick him up at the  AFC but know that he is interacting with other people. My caregiver comes twice a week, and I actually disappear for 5 hours while she is here. It is so important for us to take care of ourselves.  You need time for yourself even if your husband wants to stay home all the time. My husband likes to go out to eat so that is an outing we both enjoy. It has been over 6 years since he has been diagnosed...I know I push him a little bit and he does get annoyed but think the more he interacts (at his pace) the better. I have some information that I think would be helpful to you...I am in a clinical trial for caregivers through UCI Nursing program. Would love to share information to you.

Memphisdee

I’m interested in your info also!

CStrope

Cherjer, yes please share.  I think my overall personality does not help me in this caregiving situation.  I have always been one to put others first, and now more than ever.  

JoyDean, I can totally relate.  And since he retired from teaching 6 years ago, he has been the main laundry person, so throughout this all, that has been a godsend.  Over the past week, he has forgotten how to start the washer and the dryer.  So even though he still says he's doing the laundry, I have to jump up from my work, assess what he has put into the machine, put the soap in, and get everything started.  But he will continue to say he does the laundry.   All day long, "can you just help  me quick", so I have to stop everything and jump up to help him with whatever he's doing, all while he brags about all the work he does!

Lynne D

Joydean: I find myself doing what ever my DH wants. Why? Because if I don’t then he will have a fit. Like a spoiled brat

I often think of The Twilight Zone episode with Billy Mumy when dealing with my HWD. I do what he wants to avoid reputations. Repercussions are his superpower.

Things can get better. There is respite care. There is a lot of sleep. 

I feel like my HWD is still here on earth but already belongs in heaven. 

RNS

Crushed,

You have no idea, or maybe you do, how much I needed your message today.  My 87 yr old DH has been diagnosed with vascular dementia for 8 plus years following a brain injury.  I'm new to this forum but find it so helpful.  I am 67 so I feel like my life is over. I just cant imagine how long this can go on and then I feel guilty.  I'm lonely and sad but also feel so badly for him.  This is just so hard.

Daughter of a Marine

I'm also very interested in any information you can share - feeling a bit desperate.

Daughter of a Marine

These comments hit so close to home - My DH is 74 and was diagnosed with mild dementia about 8 years ago. He had spinal surgery last May, was under anesthesia for 4 hours, was on heavy pain meds and suffered from "post surgical delirium" afterward, with hallucinations, etc. It continued for a few weeks until his neurologist put him on Seroquel which helped enormously.  But I've noted significant memory decline since his surgery, with the worst of it being a real lack of empathy.  The man I know has always been very attentive and considerate when I'm not feeling well.  But when I recently experienced flu symptoms, he just continued watching tv and never asked what I needed, whether he could make me some tea - nothing.  This was a rude awakening and let me know that I'm really on my own.  I was sad before, but this has brought a rude awakening for me and I realize now that I should have no expectations of him whatsoever.  I was sad before - in full blow grief now.

FTDCaregiver

I too am fairly new to this as my DW was diagnosed with early onset FTD.  We're both in our fifties, live alone, no kids in a rural area.  I went nuts in 2019/20 with her phone spamming me at work, my cell blew up in meetings, so embarrassing couldn't talk to anyone at work but they knew something was wrong and the calls as well from our neighbors on her wandering, finally had to retire early last April to take care of her full time, too dangerous for her to be alone.  Fortunately, I was in a position then to make it financially and felt much better when our estate/POA issues were finalized as well.   I really struggled mentally but finally fought and got her on disability through our state's Medicaid Waiver Program (Michigan), up-hill fight all the way.  With that the clouds seemed to part, I was alone and finally got help!  First thing, I got an in-home care worker so I could leave and do stuff.  It was dicey at first as my wife wanted to come (but she can't travel much as she tries to jump out of the car in hysterics). but the care worker is simply awesome with her.  Anyway, I can get respite now when I need, so important to take time for yourself, don't feel guilty.

French

I think I am not someone who easily is depressed. I am quite positive and always fighting. But I must say that these 4 last years, I had very bad moments.

I'm too young to let this disease drown me. I've always decided that I will not let it destroy me. I have always kept time for myself (sports, friends), my children and my work. Less than before of course. So getting help was not an option, but to save my life. 

What is difficult is that I hate what I have become when I am at home. Everything weighs on me. I spend all my time bitching and complaining.

I decided from the beginning that I would organize myself to find a solution for him as soon as staying at home would be too difficult for the children and me.

Here we are, mid stage 6.

Yes, I feel selfish, but I also know that I am saving my life. Between him and us (my children and I), I chose us. But I did all I could to find the best solution for him.

I really don't know what it will be like in 11 days when I come back alone. I think it will be hard.  

Being selfish while dealing this disease is certainly better. I know it is not easy if not your nature. It isn’t mine, I just decided.

Crushed

With DW there were "Phases"  to the disease 

2009-2010  pre-diagnosis.  DW was involuntarily transferred /promoted  from being chief of a development program of 50 professionals to the top policy making slot in the agency (changing in law nothing to do with her performance)   She was angry and irritated Started to make tax mistakes.  Became less interested in DD#2 wedding  causing rift with daughter  

However she was extremely happy to be with me.  She was 57-58 very friendly and romantically enthusiastic.  She had more time for me with new job since she could do much of it at home.  

Sept 2010  I noted she could no longer add.  (summa *$%& laud in math and could not add)She failed the clock drawing and every other cognitive test.   three top doctors called it Mild Cognitive impairment.

By November 2011 She could not meaningfully do her job even from home.  We made a deal to organize her papers for the National Archives that would run to April 2012.  I took her to the office every day and waited for her in a coffee shop

 I was her 24/7/365 caretaker from November 2011

March 2012 Diagnosis was changed to Alzheimer's.   She went on terminal leave on April 9.
 Stopped driving.  She was 59 
From 2012- 2017 there was a steady decline in her executive ability One after another the mental lights were going out.  Skills declined to nothing She could think but not act.
But we traveled extensively She loved photographing animals.

 
Early 2017 she started wandering and then developed a severe psychosis .  

Signed her last document in march 2017. 

We took our last trip (whole family) in August 2017 .  Wandering and psychosis were severe and by October she went into memory care.  She was already in the lowest quartile of patient ability  By August 2018 she had no idea who I was .  by summer 2019 she needed to be hand fed .  Today she can walk and swallow and that is all

She is 69
 

  

markus8174

CStrope wrote:

I'm really struggling with the "carve out time for yourself" aspect of caregiving.  My DH gets upset if I even go to the store without him, because since he can no longer drive, he can't go anywhere alone.  Lately he doesn't even want to go out for a bite to eat, he'll say let's just stay home.  

So my question is this, do I force him to get out?  At first I used to make him get involved with life, but lately I've just been appeasing his desire to just hide out at home.  Not sure which is better for him.  I don't want to make him do things that are too uncomfortable, buy I also don't want him to spend years being miserable hiding out at home.  We live in a rural community, so the options are limited.

CStrope.

I had a similar experience with my DW. She and I went out to eat 3 or 4 days a week. Shopping, a show, a walk in the park or woods were our daily pattern since I retired. As her AD became more pronounced, I think anything "out" was more and more anxiety causing for her. She knew she didn't have the capacity to function in a public setting without me, even if she didn't always understand why. The last 2 years before her care became too much to safely manage at home, she was even overwhelmed by more than one family member coming to the house at a time. Our grandson insisted on bringing his wife and 3 kids over occasionaly, and after a 1/2 hour or so my beloved would flee to the bedroom or bathroom with a "headache". I wanted her to stay connected with family and friends but I came to understand social interactions caused so much anxiety for her it bordered on tourture to force her to interact in any but the most subdued setting. She was morbidly depressed for all the next day after one of these visits.  I fear for her they just shined a bright light on what she had lost. Rubbing her nose in her inability to cope and participate in activities she once loved wasn't doing her any favors. Still, all the more time for me to love her, so it wasn't entirely negative.

Newbernian

Dear Depressing Realization...That would have been the pseudonym I would have chosen on my wedding night if I had the foresight.  Good luck my dear.

Dear Crushed...Where were you 38 years ago on my wedding night???

I have told him we are in a race to see who's mind is lost first.  I told him, I hope I am the one to lose mine first.

Merry Christmas to Everyone in whatever form that means for you.

CStrope

Markus8174, I believe your comments are spot on.  2 days ago we met an old college buddy of DH's at a restaurant an hour away.  The lunch was arranged by myself and the buddy, with his approval.  For 3 days leading up to that Sunday, there were constant questions about when we were going, how long would we be there, how long was the drive, etc. During the entire time we spent together, I think DH spoke less that 30 words.  This was his college buddy, and someone I only came to know through DH, but the conversation was 95% between the two of us. DH was also very anxious during the meal, and asked several times if it was time to go home. Yesterday, the day after the lunch, DH was very sad and I even found him crying a few different times.

I think you're correct, there is a part of them that understands that things aren't right and they can't change that.  When our daughter visited for Thanksgiving, I noticed DH spending a lot of time away from the rest of us, quietly relaxing in the bedroom with the dogs.  I'm sure the same will happen over Christmas.

Paris20

My husband was diagnosed with mild cognitive impairment in 2015, after waiting for many months to get that neurologist appointment. I recall setting the table one evening, soon after hearing that DH would likely develop AD. As I placed the knives, forks, and spoons around the plates, I thought, “These are still the good times. Remember that.” As I reflect on that memory, I see how right I was. Going through this journey feels like going down a hill in the dark, but we learn to navigate, through our reading about dementia, through trial and error, and by turning to those who’ve been through it. That’s why this forum is so important.

I constantly hear about finding time for myself. My husband trails me everywhere I go. I had to take our beagle with cancer to the vet this morning. DH wanted to go with me but I knew how difficult that would be. He fussed and fumed, a real temper tantrum, but I left without him. He stayed with his aide. That was my time for myself today. In other words, I can’t really find me-time. What I did find, for the first time in my 74 years, was an antidepressant. My PCP convinced me to try Zoloft and I truly believe it has enabled me to get through each day with DH, who has recently been put on Seroquel, an antipsychotic drug. I strongly agree that whatever it takes to get through these horrors each day is what we must do to keep ourselves intact.