Ready To Let It Go

[lgelb]

Switching to AC power and resetting the alarm doesn't help? Or removing the battery?

 

[pdcraig]

I had to smile a little reading through this. Once again a sigh of relief, I'm not the only one. The shift in the relationship dynamics with our PALS can be difficult.

From the CALS side of things, we're often feeling overworked, over stressed and under appreciated. Worried about everything. "I just need 10 minutes to myself." Not a fertile ground for romance and intimacy.

On the PALS side, there is depression, anxiety, meds, lowered energy levels, pain and often feeling less attractive because of the illness. Very often a mood killer as well.

We never seemed to get the timing right.

I was not ready to give up sex at 47 but my PALS just isn't interested. I was surprised what a hit my self esteem took when the look in my PALS eyes was always need never desire. No amount of reassurance on my part makes him believe that he's still the one that I want. It's made for a few awkward moments during bath time.

I miss those lazy weekends in bed. Now when I hold his hand, it's to do massage to ease the cramping. :|

Paul

 

[SLAUGHTER1555]

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.

Michelle You said a mouthful! It takes everything not to walk away! Today my PALS had an appointment to see the chiropractor and his legs were so weak he could not stand so I could dress him I couldn't get him off the commode smh his legs buckled when he went to sit down. BTW he does not walk or stand but we use the Walker for him to pull up and kinda transfer to the toilet. That is getting very hard as his legs get weaker.

So he falls down half way on the commode the and halfway off the raised seat omgoodness I'm trying to pull him up he can't help at all! I was so angry I just told him I can't do this laone! He wants to go to the chiropractor 3 times a week we pay 40 bucks a month which we don't have. It takes longer to dress him get him in the car since we don't have a wheelchair van and the chiropractor takes oh about 20 minutes! Don't get me wrong I'm all for trying to help him feel better but not in 6 degree weather. The chiropractor can't fix ALS.

Well we never made it to the appointment I refused to go. I'm hoping the hoyer lift makes a difference we can not continue like this. It's supposed to snow tomorrow and guess what we are not going tomorrow either.

No one person can do this! It's nobody but the God who has helped me these last 8 months. It's like he don't get it you want to go go go but hey I'm doing all the work!

I think I need to go to the ER but I have to get someone to watch him. Michelle you are so right it's like our lives don't exist anymore there is no time for anything me. It's none stop all day almost. I stay up all night while he sleeps just to have me time. Anyways it's the story of ourgency lives and what you do for love.

 

[SLAUGHTER1555]

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.

You said nothing wrong and glad that worked for them but that is just the last thing on the list for me. And as I stated earlier I had the same complaint before ALS and I was ignored and now the roll is reversed due to no one's fault but you can't expect me to bring back what was pretty much gone before this disease. That's not fair to me but he counderstands care less smh lol. If it wasn't for the church I'd let him have ano escort lol. Thanks Mike

 

[SLAUGHTER1555]

Jen I'm not the one wanting it and we have very limited family his brother is in Cleveland he sends money when he can, his oldest son who would help if he was here lives in Atlanta and the 2 girls that live here you can't depend on them them. The oldest has 3 lil ones my PALS has no patients for babies and the younger girl is so not dependable she was the one who was supposed to take him to the doctor this week smh. So no help here at all.

 

[Nuts]

Ladies and gents, we all know it's not all joyful and happy dealing with this disease, and it's really ok to vent about the tough things. If you want full disclosure you might, as Tillie recommended, try a closed forum on FB. There is an ALS caregiving spouses group that is the most private I've found. Even some of the caregivers forums accept multiple family members.

Mike, no need to duck, my friend. Just like the progress of the disease, there are many variations in relationships. In a loving, kind relationship, much is possible. On the other hand, when one is inconsiderate of the other the rest of the day, what others cherish becomes a chore. Then there's this issue of what so many medications to do a PALS and what stress does to a CALS. Someone on the forum once remarked that if a PALS was unkind before the disease they weren't going to turn into a saint by virtue of the disease. Same goes for CALS. I guess our s e X lives are simply part of that bigger relationship picture. As you say, there are many ways to show love if one has the inclination.

Michelle, sweetie, you need to invoke the Becky rule. If you visit overnight, you cook for me and entertain yourself. I let people know that I'll be behind closed doors tending to Matt much of the time and I can't promise how much interaction there will be, but that we'd love to spend time with them when it's possible. The rest of the time they are to make themselves at home (and that includes cleaning up after themselves). I used to ask that they put fresh sheets on the bed and bring me the dirty ones before they left. Now I ask that they strip the beds first thing in the morning on the day they leave and, if there's time, wash and put them back on the beds. I used to put in long days making visits perfect. Now a perfect visit is one where I don't do any extra work.

Big hugs to all and to all a good morning!
Becky

 

[KatieNBoyd]

Ah, so little typed but SO much said in a post that helps me get through the day. To know that others are out there nodding their head and saying in their minds.."Yep I know where you are coming from, been there doing that" makes this place like the last lifeline on the planet. And to top it off the words of wisdom shared. Thank you all!

 

[Dizmom]

I agree with Katie. i don't post much but I read all the time. Like to see many have the same feelings and experiences as me.

Thanks to all who share their thoughts in our Busy busy days.

 

[pittsburghgal]

I love the "Becky rule" and plan to invoke it soon. The entire family of my PALS live far away in other states and I can understand that they want to visit him but it is a tremendous burden on me. I am the sole caregiver of my PALS, who has a trach and PEG and is wheelchair bound. Because his family lives so far away, they stay as much as 6 days each visit. I just can't take care of him and cook and clean for them as well. We just finish a visit with one of his siblings when the next one wants to visit. I have been reluctant to say anything because my husband really enjoys the visits but it is really taking its toll on me.

 

[Dizmom]

I use the Becky rule X2 I make siblings and visitors help out with care. They came to help after all.