Tired of doing this(today)

caberr

DH was diagnosed in 2018 with ALZ after years of problems.  I don't know what stage he is at and I don't think it really matters.  He has gone downhill since November.  He thinks the people on tv are his friends and are talking to him.  The news, which I am trying to limit, bothers him.  He hears war and killings and gangs and is afraid people will come into our house. He tells me to be sure the doors are locked.  

When he is not standing over me, he stands in the kitchen and sings along with Alexa.  He does it for hours.  He is content and I know where he is.  

We walk up and down the street, and he has a hard time finding our house.  He is stubborn and says he knows where it is as he goes to another.  Then gets frustrated when I try to show him.  Actually, he gets frustrated whenever I try to help him.  He asks for help but then doesn't listen.  I think he wants to prove he can do it.  

He knows his parents are gone but brings them up a lot lately.  His dad passed when he was 14 and he never really talked about him until the past few months.  He gets upset and cries. I tell him I know it hurts, my parents are gone too, and it hurts me. He will give me a hug and be ok. 

I am having a hard time with the bathroom issues.  He is not incontinent (I'm dreading that) but I have to clean the bathroom so many times every day.  

Bedtime takes forever. Every morning I lay in bed thinking...here we go again. The same old stuff just a different day.  I keep praying for a miracle which I know won't happen.  I pray he doesn't suffer and when I pray this doesn't last too long, I feel selfish.  I don't want him gone but I don't want him to be like this (neither does he).  

On the upside, he is basically a happy person.  He doesn't get mad at me and tells me he loves me, even after I've been not too patient with him.  

Thanks for listening.  I know you are all going through the same things.  I'm tired and I guess this is one of those days that I feel like I can't and don't want to do this. I truly hate this disease. 

Ed1937

Rant when you need to. We all understand, and we're here for you.

Crushed

I want to say something cheery and cheerful but the sad reality is you are describing my wife in 2017-18 when she went into memory care.  Psychotic, incontinent and an aggressive wanderer  By mid 2018 has no longer had any idea who I was.    Since then it has just been slow deterioration.  She can still walk on her own and chew and swallow.  She is 69 and otherwise in good health

M1

caberr we all get it.  Some days are just sooooo difficult, no letup.  I think, how can I possibly answer the same questions one more time, avert the same behaviors over and over and over, endure the isolation.  How many times can I check this forum for something to do when I can't go outside, and there's no one else to talk to except the dog.  And I'm not dealing with incontinence or delusions yet.  

Don't feel guilty about wanting release for yourself or your loved one.  Completely understandable.  As I said yesterday, I also end up hoping or wishing (wrong word?) that any other intervening health event that could happen to an 81 yo will intervene and take her before there is further deterioration on the mental front.  And yet I have done everything I can to protect her from covid, etc.  It's all paradoxical...

toolbeltexpert

caberr wrote:

Bedtime takes forever. Every morning I lay in bed thinking...here we go again. The same old stuff just a different day.  I keep praying for a miracle which I know won't happen.  I pray he doesn't suffer and when I pray this doesn't last too long, I feel selfish.  I don't want him gone but I don't want him to be like this (neither does he).  

You wrote it for me. Every night I try to make sure all the dishes are put away  ect. If I don't, that can linger on.  Every morning rinse and repeat,  I don't  want my dw to suffer thru and she doesn't want to be a burden.  Like you I have those same thoughts of selfishness. I pray that God would be merciful  and you are definitely  not alone.I  Have a routine  but I try to mix it up. But feeling trapped is sometimes overwhelming. Looking forward to sunnier days. Caberr keep on keeping on. So glad  your dh is a happy person.

Vitruvius

caberr,

My DW is in a similar state, except total delusional all day. She is generally pleasant and relatively calm, but demands my undivided attention every waking minute.  She needs me to do so many things for her basic survival. This is what makes me feel so crappy about wanting it all to end. 

Quilting brings calm

== I also end up hoping or wishing (wrong word?) that any other intervening health event that could happen to an 81 yo will intervene and take her before there is further deterioration on the mental front.  And yet I have done everything I can to protect her from covid, etc.  It's all paradoxical...==

M1-  this is my wish for my Mom and step-dad also.  She’s 83,stage  4 in my opinion, MCI according to doctor.  In a walker. With severe back pain. He’s 82, metastatic thyroid cancer ( lungs/ stable), emphysema, other physical issues, and likely stage 4 himself ( undiagnosed).   I pray that something takes them before they can no longer be in assisted living.  It sounds so cruel especially when I think how  soon 83 will be for me ( I’m 63), but they both intensely dislike this stage of their lives. 

Jeff86

We get you, Caberr.  This caregiving gig is mind-numbingly repetitive, physically and emotionally exhausting, and heart-breaking.  No one signed up for it.  And yet, it must be done. 

It’s hard not to want an end to this.  Knowing the further future declines this disease will bring, I dread it and hope something else intervenes.  I can’t want my DW to die; at the same time I’m not sure I want her to live much longer.  

And then I feel terrible about having such thoughts.  My DW is much easier to care for than many PWDs.   Not angry, not aggressive, not wandering.  Accepts, even wants, help.  Tells me she loves me even though she doesn’t know my name or our relationship.  Has some days where she seems to experience some joy   

And yet.  Who she was is gone.  Ambiguous loss, certainly.  So much cognitive dissonance is hard to live with.  

M1

Thanks for reminding me of that phrase and concept Jeff.  Ambiguous loss I tend to remember, but cognitive dissonance is an equally important aspect of all of this too.  Helps to understand what one is feeling....

Battlebuddy

   We sure do belong to one crazy prayer group ! Never in a million years did I think I would be praying release prayers for my husband. Please God shorten the time. Just move him forward to you. Don’t keep him here for me. Lord let one big seizure just take him .. I think there is a lot of Love in all our prayers/ thoughts/ wishes.  A lot of faith. But also guilt and shame for praying and thinking them too.

  Thanks everyone for expressing it. I know I’m not alone in this thinking and desires. Makes me feel less guilty if everyone does it. 

Bear4040

I am new to this and when I read you comments I’m so surprised that’s my husband but he had speech problems but I feel as you do I pray for a miracle keep posting it helps