LOVE your PALS

[joelc]

I want to encourage all CALS to not lose the love you once had for your PALS.

Once you become a caregiver it seems to be easy to take on that roll and not love you PALS the way you used to. To not hug them, kiss them or have any physical contact. Remember that your PALS is still the same person they always were, in most cases. They need your love.

I have become a patient only and miss the relationship we used to have. Don't do the same thing to your PALS.

 

[Miss]

That is a beautiful sentiment Joel. I'm guessing that you give the love you used to and don't treat your wife as a caregiver. Not the case here. About once a week, I hear a thank you and about once every two weeks, I hear an I love you. Being ordered around all day makes it hard to feel the love.

 

[joelc]

I hear what you are saying and find it unfortunate when PALS treat their CALS without the love they used to. I realize it is definitely a 2 sided affair.

I don't make demands and I say thank you multiple times a day and say I love you many times. I am not bitter about having ALS and have total peace with it. I do not treat my wife as a caregiver or order her around, I don't do that to our caregivers either. But I realize I am in the minority with how I have reacted to things. I really miss my wife and the relationship we used to share.

 

[stephie]

Joel,
I understand what you are saying completely. I feel very guilty when I treat my husband like a patient. It is sooo hard to have another person dictate every moment of your life! I love my husband very much and there are days when I am able to treat him more like a husband than a patient. But there are also days when I am so stressed and tired that I am not able to treat anyone the same way I usually would (kids and coworkers alike). I try to remind my husband that every single thing I do for him (scratching an itch, helping him use the bathroom, wiping his nose) are all signs of my love for him. I could not continue taking care of him the way I do if I didn't love him.

On the flip side, he is very good about saying thank you to me. He is a much different husband than he used to be, though, because his first concern is always his needs. I do not blame him one bit, because they are things he can not do for himself. When I come home from work it does not occur to him to ask about my day or have a conversation with me. He always begins with "I have to pee" or "Can you move my arm." He is polite and grateful, but I am definitely not number one on his list anymore. He does not compliment me, ask me what I want or need, or ask how I am feeling. I am glad that he is good at making his needs known, and his doctor has said that my husband has probably lived this long because of the care he is receiving. He just spends most of his time taking care of his own business.

We have both changed so much. I miss my husband and he misses his wife, but I don't think either one of us had much choice in the matter. Please know, Joel, that your wife would not be such a good caregiver if she didn't love you!

 

[joelc]

Thank you for your comments! This should be required reading for all PALS.

Keep the comments coming! It is good to understand both sides perspective.

 

[abbas child]

Joel, is there any chance your wife is depressed, causing her emotions to flatten? It seems that having had such a loss in the ways the two of you can communicate coupled with the move, which you've said was in hindsight a mistake, she may have depression. I'd assume you would know, however if she does.

I really feel for your inability to be able to reach out and touch her, or to be able to use your voice, Joel. Phil often looks beat, especially when coming home from a 12 hour day away only to cook, wash me, brush my teeth (help me, not totally do it all yet), put me to bed..then go take care of (my!) chickens, etc. until bedtime. If I couldn't reach over and grab him or tease him to get a smile, it would seem very barren and so sad.

In any case, we pals do need to be generous in giving thanks and also expressions of love to our spouses, whether they return the same or not... just as we'd be kind and considerate of someone we paid to give us help, but even more so with our loved one.

I wish they (the spouses who aren't loving) would read these comments and consider that this is their only chance to "do it right", and there will be a lot of time to regret what is not done in love.

Ann

 

[Jellycat]

Hi Joel,
I know it's not the same -I care for my mother, not my spouse- but I have picked up on your earlier posts as well as this thread how much you miss the relationship you had with your wife. Again, I know it's not the same plane at all but I miss my mother so much. I miss the chats we used to have, the things we used to do together. In many ways my 'old' mother has gone. I try not to dwell on it any more.

I love my mother. I admire how she has handled this illness. She was the most independent woman I knew. I'm amazed at how she has fought to do as much as she can for as long as she can and then when she can no longer how she takes help. Though the 'old' woman is disappearing, new aspects are appearing. Now she is totally dependent and it is hard, so hard. She is not demanding but at the same time most, maybe even all interactions are about her needs. Stephie
described it perfectly. I try to remind myself that it can't be otherwise since she can't do for herself. I try to do the myriad daily things with love. I fall down miserably at it when I myself haven't had chance to do some of the basics for myself. And when I do fall down, I try to remind myself that being there, staying, doing the tasks, dealing with the upsets is itself an act of love even if today I can't do them with as much affection as i'd like.

Long post. Hope it'll make some sense.

 

[abbas child]

Avril, it makes perfect sense to me. And as we've chatted, I know something of how you've been stranded by weather with no outside help coming in. You are utterly committed to loving and to caring for her, but become exhausted. Well, the next time you have to do the acts without warm fuzzy feelings, remember that she knows you very well and understands. I don't believe that love is only a feeling. There is an aspect to this disease which is more like being in war, and faithfully doing what is needed is love in action.

 

[smwelder]

I thank all of you for posting on this topic. Since I’m new to all this I rely on all your experiences with living with this. I can see how the roles we played as husband and wife can easily become lost and things become service oriented. Once again I thank all pals and cals that post here for giving me hindsight To what I will face

 

[abbas child]

Dear SM, flirt like crazy for as long as possible. That is my mature advice.

 

[BarryG]

And my immature advice is to flirt like crazy with everyone!

 

[LornaDoone]

My Pals went through this very thing and they are just coming out of it. Their solution was to hire more help. This involved cutting back in other areas. But it has done WONDERS for their intimacy. They can now focus more of their energy on each other's mental needs and not just the physical needs. I'm super pleased. Being a caregiver is tough and it's SO hard making that leap.

 

[LornaDoone]

And my immature advice is to flirt like crazy with everyone!

And I have a feeling you do just that! 8)

 

[joelc]

We have a couple of outside caregivers that are here for 60 hours a week.

 

[Miss]

Good Lord! If I had 60 hours of outside help, we would be living an entirely different life! If they only came at night so that I could actually get more than 2 or 3 hours of sleep at a time it would be life altering. I handle my husband's care 24/7. I have a CNA that comes every morning to help me get him out of bed, bathed and dressed. One of the children helps me put him to bed at night. That's it. Granted, he isn't completely locked in yet. He has lost his voice, hands and arms. He can be lifted to a stand and maintains balance with two people helping. If I take care of all of his needs and he is settling in for a nap, I can leave for 30 - 45 minutes of errands. That feels a bit risky, though. 60 hours of help! Wow!