Ready To Let It Go

[SLAUGHTER1555]

Hi everyone

Today has really been along day with my pals as he woke up this morning wanting to talk as we usually do and he began by telling me how good of a caregiver I am so ok. Then he says he starved for affection! Huh! Like are you serious I try to hug kiss caress say kind words all day long. So we went back and forth about this til he started to cry and have these big out burst! Omgoodness! I was so upset til i told him if he did not stop all that yelling and loud crying out burst i was going to call his daughter and leave. And he does not have PBA i think thats what its called.


So with all that I do on a day to day basis, as tired as i am all of the cleaning and cooking and emptying of things sorry your meaning of affection is not on the top of my list! Before ALS i had a similar problem and i was ignored but now since ALS everything is a bigger issue and ITS NOT FAIR! I try to remind myself that its not about me and this is why he is this way or that way but hey I have feelings too and this is a lot to carry.


I am tired i'm sore my back my neck my legs my feet smh I'm so out of shape just worn out! I have really been contemplating a nursing home or telling his family I cant do it. I did talk to his brother today and told him what was what but all he every says is you can do it or your stronger than you think well yeah that may be true but thats not how i feel right now.

Well we had to take a trip to day and as i was driving i just started to cry but i said no i refuse to cry and i put on a gospel song that said i will trust in the name of the God. Then i tried to encourage him and me as we sat in Walmart parking lot for a while talking. I told him i was not going anywhere one because his daughters would misuse him i think and the level of care i give him i know they would not keep up.


I miss working and i miss my husband now we were and we are trying to adjust but sometimes i dont think we are going to make it thru this smh! I try not to be selfish and think of what i want and me me me but man we didnt sign up for this man i feel like im to young to be doing all this but then i have to remember for better or worse in sickness and in health! Truly those are some serious words and i can help but wonder did i really understand what i said well guess what im finding out now huh


Well as he got ready for bed he kinda started again with the affection thing smh yeah we are not doing this again dont start.


I have yet to read any issues like this on the forum, are there other CALS who have dealt with this affection part of ALS I honestly don't know what to say anymore i feel so pressured and like im doing something wrong and its just one more thing on the list of chores. Sorry to say it in that way. I really dont mean to sound like i'm complaining lord forgive me.


Anyways Im so tired and sore lords will lets see what tomorrow holds and how my pals feels. Hoping were done with this subject and can plan some type of get away cuz we sure do need it. Thanks guys for putting up with me threads. Good night

Slaughter

 

[affected]

I'm not sure if by affection you mean s e x. To me they are not necessarily the same thing, but you may be trying to just word it sensitively.

I think some subjects are difficult to discuss on an open forum like this.

Do you use facebook? There is a closed CALS group there that is very private, only members can see anything posted there. It is called ALS Caregivers if you search it on fb you might want to request to join there.

It isn't that this cannot be talked about here, but answers may be difficult from some members because of how open this forum is.

 

[Atsugi]

I'll discuss anything, anytime, anywhere.

ALS doesn't reduce the need for physical affection.

But it often does change our relationships. Sometimes a CALS no longer sees a beloved spouse, but instead sees a patient who is a tremendous challenge.

Many terminally ill people become highly focused on their own needs. I think that's natural and to be accepted. As hard as the CALS life is, the PALS has a different perspective, and sometimes the two don't match.

You definitely need some respite, and maybe even some counseling. Perhaps your church can help?

 

[gooseberry]

A home health aid a few hours a day may also help. If you could swing 4 hours then he could be bathed, his laundry done, a meal fixed for him, etc. And you could try to find a part time job. That might really help.

My pals still wants to be hugged, kissed, snuggled. He wants to be touched. If we are on the couch watching a movie he holds my hand. He didnt used to do that. When I bathe him, I always kiss him after I have dried his head.

The other physical part was gone before the disease was diagnosed because of breathing issues. I guess what I would say is dont be afraid to touch him at an odd time when it isnt necessary.

 

[SLAUGHTER1555]

Hi Tillie and yes I was trying to be respectful and sensitive I was just frustrated and need to get it out. This has not been a good weekend as I am tired and really at a cross roads everyday of whether to stay or go. While I truly love my PALS doing this really changes things in a person smh.

I had a Facebook page but I got offrom as I found it taking us alot of my time. I hope I didn't offend anyone by asking this type of question i really did try to use proper words. Thanks guys for just responding you all have no idea how much having you on this forum means. You all really become a voice of reasoning lots of times.

 

[SLAUGHTER1555]

I'll discuss anything, anytime, anywhere.

ALS doesn't reduce the need for physical affection.

But it often does change our relationships. Sometimes a CALS no longer sees a beloved spouse, but instead sees a patient who is a tremendous challenge.

Many terminally ill people become highly focused on their own needs. I think that's natural and to be accepted. As hard as the CALS life is, the PALS has a different perspective, and sometimes the two don't match.

You definitely need some respite, and maybe even some counseling. Perhaps your church can help?

Hey Mike yes we plan on tasking to our pastor but you are so right he does not hear me when I tell him how tired I am and how bad I'm hurting smh. We had this same discussion again this morning with the same results and I just told him you don't get it and we just have to disagree but you can't make me do anything I don't want to do and I refuse to feel guilty about it. If I'm broke down you'd be in the smell boat. Guess what he still stuck to what he was saying and wanted lol.

Mike and yes you're right I don't see my spouse it is like caring for my kids just harder and more work. I love him with all my heart but I am not attracted to him in that way anymore. I would not tell him that as I don't want to hurt his feelings as he already feels inadequate debtor this stupid disease.

 

[SLAUGHTER1555]

A home health aid a few hours a day may also help. If you could swing 4 hours then he could be bathed, his laundry done, a meal fixed for him, etc. And you could try to find a part time job. That might really help.

My pals still wants to be hugged, kissed, snuggled. He wants to be touched. If we are on the couch watching a movie he holds my hand. He didnt used to do that. When I bathe him, I always kiss him after I have dried his head.

The other physical part was gone before the disease was diagnosed because of breathing issues. I guess what I would say is dont be afraid to touch him at an odd time when it isnt necessary.

Gooseberry he can't sit on the couch he is always in his recliner or power chair or manual wheelchair. We have not slept in the same bed for awhile because he doesn't function at all it is the worse time. So that plays a part too but I am always rubbing his head or kissing him on his head or I'll grab his hand while driving sweetly call his name for no reason. I really try and show my love in the mist of all this and surprisingly he does none of that for me but I understand and I don't look for it but he doesn't touch unless I touch or kissed and he has never said sweet things before ALS so I really don't expect it now.

It is physical what he wants and I really believe it's out of guilt on his part as there were issuesome before ALS and now he sees it's a done deal for real it like a donor die thing. And I refuse to be guilted byby. So we shall see where this goes but I'm done with whether he is or not. Thanks for sharing it's information like this that help. Most of all the Cals stuff I read is happy and joyful so I was a shamed and a lil embarrassed to post this but i tell you I was about to lose it and walk right out.

 

[affected]

I thought you were asking about more than touching his arm and giving him a kiss.

Mike says he will discuss anything, but I am afraid I won't talk about some of these details on an open forum, so far as my own experiences.

Others may be happy to be able to talk about that here, but some of the CALS here have their PALS reading much of what is said.

It's not inappropriate for you to ask, I just feel a more private forum will give you more honest answers.

 

[Atsugi]

"Most of all the Cals stuff I read is happy and joyful so I was a shamed and a lil embarrassed to post this"

Don't be ashamed or embarrassed. Not at all. We've had quite a few unhappy and unjoyful rants between us here in this very subforum. You gotta let it out sometime, somewhere.

 

[SLAUGHTER1555]

I thought you were asking about more than touching his arm and giving him a kiss.

Mike says he will discuss anything, but I am afraid I won't talk about some of these details on an open forum, so far as my own experiences.

Others may be happy to be able to talk about that here, but some of the CALS here have their PALS reading much of what is said.

It's not inappropriate for you to ask, I just feel a more private forum will give you more honest answers.

I agree Tillie I won't go any further it was just eating at me cuz my PALS was fussing. I guess it's better either way I've made my mind up about the matter. Thanks for your response

 

[Michellesews]

Yes, I go through the same thing...all the time. Sometimes I just feel like a loaded down mule and one more thing will break my back! "Affection" is the last thing I am capable of at this point. I love him, he knows I love him or surely I wouldn't stay around for this! Just this morning he asked me why I don't wake him up to "cuddle" like I used to. I told him that the mornings, while he is still sleeping, is the ONLY quiet time I have...ever. And I need it.

This past weekend I had a houseful of guests. His son and daughter, his son's wife, and his ex-wife, mother to his daughter. She has COPD and is on continuous O2 and has trouble getting around. The two of the sat around and reminisced about the old days while I was racing around, cleaning up accidents, feeding everyone, and just feeling like I was a nurse/maid on a geriatric unit! All that made it bearable was knowing they were leaving Sunday.

After they left I was so tired I wanted to die. Al looks at me and asks why I'm so tired? I truly wanted to choke him to death. I decided ALS patients must lose all feeling for their caregivers. I have nothing in my life I enjoy any longer, it's just a constant tending to his needs...and me wondering if it will ever end. Then we have the trilogy alarming all night long. It's not going to be in use tonight, I can promise you that! So you ARE NOT ALONE...,welcome to HELL.

 

[Atsugi]

I'm gonna pay for this.

What I'm saying now is not directed at the original poster or anybody in particular. I just have something to say about sex and ALS in general.

I've "spoken" to a couple of couples on this board, years ago, no longer here, about this very subject.

In one case, the paralyzed man was lucky enough to have a caregiving wife who was very accommodating to give him full satisfaction quite often. That could have been a great relationship if it made them both happy, but he was emotionally abusive and didn't give his wife any appreciation, not even a thank you. Broke her heart.

Sometimes, it's natural for persons with a terminal illness to get highly focused on themselves. Can't blame them. As Mark Twain supposedly said: "Nothing so focuses the mind as knowing you're to be hanged in the morning."

In the other case, the paralyzed wife never asked for anything, but she did appreciate that he still paid attention to their sexual relationship, both his and hers. On the occasions he could slide into the hospital bed, she liked that. And sometimes he simply massaged her with his fingers, with no care for his own needs. It made her feel that their relationship had not deteriorated into the "patient/caregiver" relationship that sometimes happens.

It seems to me that a little goes a long way.

OK. I'm ready. Let me have it.

 

[Loverly]

"Most of all the Cals stuff I read is happy and joyful so I was a shamed and a lil embarrassed to post this"

Don't be ashamed or embarrassed. Not at all. We've had quite a few unhappy and unjoyful rants between us here in this very subforum. You gotta let it out sometime, somewhere.

Oh my, all I ever do on here is complain! Who else would understand?
Be kind to yourself in small ways whenever you can. 5 extra minutes in the shower, or drive the long way home.

Talk to the ALS association about respite care. A few hours to yourself can do wonders.

I learned that if I wanted help from the family I had to be vocal and specific or no one would show up. In fact, my brother called begging to help from Indiana, but he's in Indiana, so I asked him to chip in for my sons trip to England. LOL I knew I was taking advantage, but it was on my mind and all he could do was offer money so... :twisted:

Because I quit working to care for my PAL Kathy, I never had any money, so if someone offered I'd take them up on it.

Regarding intimacy with your partner, I'm sure there is plenty of info about the mechanics of it, but you gotta talk about it so that the tension doesn't lead to anger. Just ask him.

Jen

 

[lgelb]

Michelle,

I did send you a PM about the alarms. Only takes a minute -- let me know if you have questions.

We've talked a lot about the loss of empathy by the PALS for the CALS. The physical and mental energy of dealing with paralysis minute by minute kicks a lot of normalcy to the curb-- for both, of course. Remember to use "I" not "you" statements, and as others pointed out, bail when you have to. Sometimes you get through to your husband. Many times, you just don't.

And Michelle, the next time the family calls and wants to come by, ask "What restaurant/mall/amusement park would you guys like to meet at?" Let someone else cook and clean.

 

[Michellesews]

Hi Laurie: I have all the settings turned off and the alarm turned to soft. It seems the removable battery is the culprit. I've tried to reach the rep without success.
Michelle