Totally alone

riajean

 Last weekend visiting my husband in MC, he was strangely bent; stooped over more than I've seen, his head dropped down almost resting on his chest.  He was still his sweet self, very happy to see me, saying "I love you so much", smiling that I was there, but couldn't keep his head up.  Sitting on the bed beside him, I rubbed his back and his neck and tried to get some info from him, like "are you having pain in your neck?".  He didn't respond, but his neck seemed to bother him.  Then he'd push himself up, straighten his back and neck and I'd try to help him stay up, but he'd revert back to hunching over, head dropped. 

So upset by his physicality when leaving, I asked a nurse for some meds for him, as he seemed like he was hurting and cried all the way home (an hour and a half).  I was also a mess all that night and the next day couldn't even function.  I'm a very sensitive person very much in love with her husband, and seeing him hurting or bent or sick just devastates me.  Last night in anticipation of visiting again, I was up all night.  NO sleep would come, my BP was high, upset that I was awake and worried about myself getting too upset.  This morning I texted my son to see if he or his fiance were working - just in case - could one of them come with me to visit their father.

My son's resounding response was "no".  Because I told them his condition (shouldn't I keep him informed?!) they discussed it and decided they would not be visiting.   I broke down and cried.  Now I'm totally alone on this never ending trip.  So now my son won't go see his father?  I know and understand it's upsetting, but do I have to......really have to be so alone on this?  Now I really can't function and it's another long, lonely weekend..Sunday.   This trauma is much more than I can bear and my husband doesn't deserve to be abandoned by his family  - ME being the only one who dares to see him, then suffers for days because of it.

I make light of things while with him, but seeing him just kills me.

DrinaJGB

I completely understand how alone you must feel.

Our daughter and only child is an adult and lives a mere 5 miles away, yet has not been over to see us since July. She seems vexed at me for attempting to inform her that her father has dementia, and that she could possibly benefit from looking at this website to gain more perspective (she does not know that dementia is fatal, for example)

She refuses to broaden her knowledge of what I am dealing with and what her father is dealing with. I even suggested she look at this forum to gain more perspective on what the caregivers go through, and that I am not the only one dealing with dementia---but she told me to "stop".

 .Not once has she in all these years offered to give me a break in my caregiving role.

Instead she rains down on me and starts yelling that I am "wasting half my life with all of this". All of this meaning my constant dealing with my DH brain injury from 2010, and subsequent dementia diagnosis---as well as a horrific legal matter which began in 2012 due to his sisters' malicious machinations to completely and totally ruin his already train-wrecked life.

I felt ambushed.

I, too, am completely alone fighting these demons--both known and unknown. It is hard for sure, but at least knowing there are others out there is indeed a comfort.

I wish you well and hope your DH improves soon.

Crushed

1) He needs to be checked for Dropped Head Syndrome

Dropped Head Syndrome

An Update on Etiology and Surgical Management

Abstract

• » Dropped head syndrome is a group of disorders with diverse etiologies involving different anatomical components of the neck, ultimately resulting in a debilitating, flexible, anterior curvature of the cervical spine.
• » Causes of dropped head syndrome include myasthenia gravis, amyotrophic lateral sclerosis, Parkinson disease, radiation therapy, and cumulative age-related changes. Idiopathic cases have also been reported.
• » Nonoperative treatment of dropped head syndrome includes orthotic bracing and physical therapy.
• » Surgical treatment of dropped head syndrome consists of cervical spine fusion to correct the deformity.
• » The limited data available examining the clinical and radiographic outcomes of surgical intervention indicate a higher rate of complications with the majority having favorable outcomes in the long term.

Crushed

When DW no longer recognized me or our  children and grandchildren, I excused them from visiting, and in return they "cover" for me when I travel.  I know the wonderful woman I married is gone. I make sure her shell gets the best possible care. 

Do you have a Face time or Zoom set up to take a look in on your DH?

That has been vital for me

No Idea on the kids.  my mother had vascular dementia and all the kids did their best for her. 

riajean

Combing the internet last week, I've read about all this, dropped head syndrome, Parkinson's, FTD stance, drooped shoulders.  My husband is 68. This road trip began "officially" 7 years ago, though honestly, more like 9-10.  All of a sudden this is happening.  Trying to understand (if ever and at all possible) if he's just progressing at an increased rate; what can I do, if anything?  Though I think I'm prepared, I'm not prepared for the end and what it might bring.  He's clearly in stage 6.

riajean

I can zoom chat if I set it up. Haven't yet.  So much is happening so quickly.  Visitation policies were just updated, a bit freer.  Just too much.  I don't know where he's at and may never.

jfkoc

In addition to the aloneness you are living with enormous responsibility,  frustration and  grief. 

I know that our being here for you does not make up for the "aloneness"   you are feeling. But we are here, we care, we have big shoulders and will be as close as is possible.

Paris20

Riajean, I am so sorry that this is happening to you. My daughters live far from me but they’ve told me that they’d come to me if I called and told them I need them. I’ve never done that even though I think they’d come, but I’m not completely sure. My daughters have each told me that they feel like they’ve already lost their father, but he still knows them. Sometimes he asks me if one or both of our daughters are currently visiting. I know that friends drop off the worse the LO gets, but I know it can happen with family too. I think it’s a shame, especially since we caregivers cannot say “No!”

Mint

(((Riajean))) I am so sorry.  Can only imagine how much it hurts you to see someone you love like this and you feel so helpless and alone.

Ed1937

Riajean, I wish I could say something that would help, but I have nothing. Just know that we do care, and we're here whenever you want to get it off your chest.

Iris L.

I am alone, too.  I have a family but they are not interested in my condition.  Neither my closest friends.  I never discuss my life with any of them.  

Iris

M1

I think all of us feel alone, sadly. I've written and cancelled two posts today about how just a "normal" day is so abnormal and wearying. I didn't feel like I really had anything worthwhile to say, and that just adds to the isolation. No one wants to come visit because there's nothing to get out of it. I understand why the kids feel the way they do.....and the friends too.

David C.

I also share your pain. I am 69, my wife is 62 and in 6th stage Alzheimer's. She has been in an Alz MC facility for a year. I won't go into details, because I feel you already know them and experience them. We have a strong family, yet I am the only one that goes to visit her. Every day. except when covid shutdowns prevent it. And every day I leave in tears. I have owned several small businesses most of my entire life. After selling my business 5 years ago we planned to travel more and enjoy our freedom together. Didn't happen. This cruel disease robbed us and destroyed any hope of growing old together. I feel certain you know exactly what I mean. My heart is with you in understanding, empathy, and compassion. May God grant us the ability to enjoy what we can and endure what we can't.

Mint

M1 and everyone.  Please post what ever you feel a need to post.  Talking helps and like many of you this is the only place I can come and talk about this quite freely.  We all need that.

jfkoc

Please...whatever  you want to post is worthwhile and you may be surprised how your post  can help someone else.

DrinaJGB

There are days when I think that the only way of surviving this journey at all is to have our feelings surgically removed.

White Crane

Dear Riajean,  I know that feeling of being all alone on this journey.  Our kids are willing to help but they don't live close..except for one son who lives 100 miles away.  And even when they are here, I still do most of the caregiving...and the cooking and laundry and cleaning.  It does get lonely. 

I'm so sorry you are having to go through this.  It is a cruel disease made crueler when friends and family are far or stay away.  Sending hugs and love.

Brenda