Upstate’s first post

Upstate

New member
Joined
Aug 9, 2019
Messages
2
Reason
CALS
Diagnosis
01/2018
Country
US
State
NY
City
Albany
This is my first post . I have hesitated because of how everyone will view my situation...My husband and I have been married for 5 years. It is a second marriage for both of us. We dated several years before but we were still in the throes of teenage children and decided the time was not right and we went our separate ways. Fast forward about 6 years when he reached out and shortly thereafter we were married. There are other details I will leave unsaid but a couple of years into the marriage I started to think I may have jumped too quickly into the marriage thing.

I was trying to work through my feelings and was ready to start to have the "separation" conversation when he started to show symptoms of ALS. (His Dad died of ALS at 48). We went through several diagnosis and just as many different treatments when the final ALS diagnosis came two years ago.

I have not had any romantic feelings toward him in a while (even before the diagnosis) . I love him , he is a terrific guy, but the romantic, intimate feelings have left me completely. The day to day caregiving( toileting, feeding, showers eat) have not helped change my state of mind. I have tried to explain this too him several times pre & post diagnosis but it gets us nowhere.

So here I am ... I cannot leave him - there is no one to step in and take up the slack, besides I took a vow! I ended up retiring so could take care of him full time. But this is not the retirement I planned. My life is not my own , I am basically at his back and call. At first I WAS overwhelmed with resentment and anger but I have been able to temper that over time.

And that leads to another issue I live with daily ... GUILT.... how can I be so selfish. this is not the person I thought I was. Do not get me wrong, I take care of everything and I am a good caregiver. But the disease and my pre-existing feelings are just a giant rock in between us. He is dying and I am more concerned about myself than him.!!! What a horrible person I am and I I am not just saying this. I want to give him everything he needs and he desperately wants a love connection (who wouldn't) but it is just not there for me.

I am trying to dig deep and be there in every way I can.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,934
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
City
Seattle
Upstate, ALS does not respect a tenuous, waning, strong or lifelong relationship. Some marriages and other kinds of relationships founder on its rocks. Some CALS here are not married and never would have been (not that marriage defines a relationship, as you know). We are in all in different places when those three letters enter our lives.

All this cliché is by way of advising you not to let the guilt/anger/resentment cocktail convince you that you are a horrible person, because that will only increase all three. And it literally cannot be true that you are more concerned about yourself than him, or you would not have taken this on and be taking care of him in this very moment (make no mistake, not every spouse does). You are a just, brave, compassionate person, doing the best you can. Let us know how we can support.

Best,
Laurie
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,588
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Hi Upstate,

I'm originally from Port Henry, so we come from the same neck of the woods.

Please don't be guilty about how you feel. Feelings are feelings.

You said he had children so I'm assuming they are adult now? Do they help? I don't think being a CALS is a one woman show or, at least, it shouldn't be. You need some time to yourself and you need to take care of your own health. I'd never expect one person to do it all and be it all.

I wish I had better solutions for you but I just thought you might like a PALS perspective.

We are all here to support one another. No question, concern, or gripe will go unanswered. We even have a Rant thread.
 

Dee Dee 0617

Active member
Joined
Nov 27, 2019
Messages
38
Reason
PALS
Diagnosis
11/2016
Country
US
State
MI
City
Escanaba
So you're not in love with your husband. Don't beat yourself up. First get some people (real care givers ) in to do the toilet, bathing, dressing, teeth whitening, and brushing. Before my husband left me, I didn't want him doing those things for me. I still wanted him to see me, not what this disease was doing to me. If you do this it will leave you free to be his friend. He needs what everyone needs to know they made a difference, an impact. You hold all the stories all the laughter, the private looks, the memories. Make your favorite dessert once a week and just talk about the things you shared. Let him know his existence meant something. This way there's no guilt or resentment, only peaceful deep and abiding friendship. I wish my husband could have done this for me. This will also give him a bit of his dignity back. If he's apprehensive about other people coming in, I was too. I was afraid of falling but once the routine was set I was fine. Good luck and may God bless and keep you.
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
132
Reason
CALS
Diagnosis
1/2015
Country
US
State
TX
City
Houston
I second what Laurie said. This is a hard journey and your continued presence speaks volumes. If you can, get some help. My pals is/was resistant to outside help, but I have introduced it a little over time and he has accepted the caregiver I hired first for half a day, then a whole day. We are now at a place where we need more help, and I will again introduce it gradually. I am researching some volunteer organizations.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,934
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
City
Seattle
Just a reminder that we try to hold the CALS section for the unique perspectives of CALS, likewise for the PALS section, for reasons that CALS and PALS come to understand. One of them is the reality that not everyone can afford or otherwise access paid help. That doesn't mean not to mention it, but not to presume it's an option.

Since Upstate is new around here and has made an important disclosure as her first post seeking CALS support, I'll suggest that PALS withhold further comment on this one.

Best,
Laurie
 

Upstate

New member
Joined
Aug 9, 2019
Messages
2
Reason
CALS
Diagnosis
01/2018
Country
US
State
NY
City
Albany
Thank you for all the support and perspective. There is also a lot of good suggestions and I will research some to see what will work for us.. At least I can feel good that being the best caregiver I can be is something. I think sometimes , I just need a break from the routine. I am planning a trip too see my folks in Florida and have arranged with family for full time care. My Mom suffers from Alzheimers and I try to go down at least once every 3 months or so to spend some time with her and my dad. Although not a vacation it is a change of scenery.

Thanks again for all you responses. It really helps.
 

vltsra

Distinguished member
Joined
Nov 12, 2015
Messages
366
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
City
San Diego
Upstate, sorry to welcome you here. I hope you find some support on the forum; I know I certainly have. My marriage was far from perfect before ALS reared its ugly head. My husband spent most of his time on his business or his mom and I have always felt that I was low in his priorities. He had very little left for me. So, as you say, being the best caregiver you can be is something. I don't always succeed and must forgive myself for my failings, but I'm doing the best I can.

As far as "being selfish", you need to have some self-preservation in order to be a good caregiver. If you completely sacrifice yourself to ALS you will end up losing yourself and you won't have the energy or will to take care of your PALS. Going to Florida will be good for you. I am trying to take a respite trip in May; I'll have to hire respite caregivers as his sister has essentially refused to help.

I've been here since 2015 (my PALS is a slow progressor) and have seen many CALS come and go. I've found both great technical help and emotional support here. No one knows what it's like except other CALS. We're here for you.

V
 
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