mother, carer, lover, friend...

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Danijela

Senior member
Joined
Dec 3, 2008
Messages
667
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
City
Bolton
Some of you may know my situation, but here's a quick recap: I am 38, partner 43 diagnosed 2 years ago. We have a lovely 10 month old boy. Laurence is progressing relatively slowly but steadily, but still working full time, driving, walking with a stick, eating and breathing unaided.

As his needs have increased, together with the needs of my son I am finding it harder to fulfil all of my 'roles'. I am ok with 'mother' and 'carer' but feel I am missing out on 'lover' and 'friend' parts.

Life is just so busy and I am the one who is organising most of day to day things. There is a very little adult time where I am not reminded about Laurence's increasing disability (through helping him out with one thing or another). I would like to meet him in town, for a coffee or a drink, once in a while... without having to help him dress, open doors for him, pick up change he has dropped...just meet him on equal terms. I am not saying I am finding it hard on a practial level (I can do all this) but just that I am missing our old life where he could meet me half way. I know the solution is to get some external help and we are working on this. How do you cope (either as a carer or a PAL) with constantly changing roles? Dani
 
I know this isn't really helpful, and that our situation was somewhat different because of the dementia, but honestly... you just .. well.. do. My son Kevin and I had (and still have) two mantras. One was "Keep on keepin' on" and the other was "It is what it is." The point being things ARE going to change, things ARE going to be different and wishing that wasn't the case just started to seem like a waste of valuable time and energy. Getting help is going to be HUGE, especially with a toddler! Get your rest, try not to sweat the small stuff.. and actually, I like your idea of doing something just for the two of you. We went Starbucks once a week even well after Glen had to stop working. Just the change of scenery was good.

Also.. give yourself permission to mourn the future you thought you were going to have. It IS a loss and that's part of what your feeling right now.

Good luck with all of it. Hang in there.
 
Dani,
One of my worst fears was that Phil would change as I grew more dependent and lost mobility. I have women friends who do a lot of the caregiving work as well as all errands and some cooking. Does Laurence have male friends who are close, and who would help him when the time comes that he needs lifting, shaving, whatever is involved? That would seem ideal, not perhaps all the time (in a dream world maybe!) but often enough that you don't just come to see him as someone who needs your bodily care.

I hope you will go out for coffee or drinks alone with Laurence, and simply do those things he can no longer do. It will then turn into the new reality for both of you. As lovers, you will have to adjust, but it can be done, and I'm sure for him at least as much as for you, it's important to not lose that physical relationship. As patients losing the outside of "who we are", it is terribly important to know that it just doesn't matter. As an aside, Phil has photographs of me all over the house next door, which was our house. A friend saw them and told me. He of course, tells me that when he looks at me, he sees me as I used to look. (I'm not sure it's possible, but he's very smart to say it!)

Katie always has so much wisdom. "Don't sweat the small stuff" is a very good goal for all of us. I hope you're able to get some outside help for your toddler and for keeping up with all your duties, so that more time can be available for the relationship.

Ann
 
A physical relationship? What's that?

Once my wife became my caregiver she ceased to be my wife.
 
I have experienced the same feelings, only with my mom (she passed 10/30).....our family only got together on weekends all of our adult lives, due to distance, jobs, etc.......as her needs increased with the onset of ALS, everything began to change....we couldn't do the same things, go to the same places, have family functions at any of our houses (only at mom's), etc......it was so hard for me to balance the feelings of wanting so much to be there for her, and yet cope with my role primarily as caregiver, as opposed to daughter.....everything was about her physical needs being met, and that is the evil of this disease....it is filled with a progression of "losses"............we did work hard, as a family, to continue whatever traditions we could, modified to accommodate our new family member, ALS!................sometimes my sisters and i would find ourselves saying, to each other, "does every conversation have to be about this disease?"........there are so many feelings that we all have in this situation, and many produce guilt and confusion.........all i can say is, try in the best way possible, to continue to do whatever you can that is about YOU and your relationship with your husband, in spite of ALS.....God bless
 
Joel, I hear ya!
Patsy
 
Dani, I am right there with you. I am 39 and my husband is 41. I have to constantly make sure his oxygen pack is charged, there is gas in his car, etc.etc. you know what I am saying! Some things just will never be the same. Today I was looking at patient lifts. He saw me and I told him it was for a friend of ours whose daughter has SMA1. I hope he believed me. He should not need the lift for some time, but I just like to do my homework and be ready when we get there. I know, not a lot of help. But I know how you feel. Good luck!
 
Dani, I struggle with the balance every day. I'm a great friend, a good caregiver, an acceptible mother and a former lover. I cannot do it all. Luckily, my children are 16 and 18, and they appear to realize that they now have to take a backseat to Dad's needs. They have learned to fend for themselves. I wish I could do it all. With a 10 month old, I hope you can find the help you need. You will have to prioritize things differently than I do. My husband and I find that we have far more alone time than we used to. Because his ALS is fairly advanced, I have to get creative to keep us occupied. Lately, we have been frequenting the zoo! We love it!
 
I've always thought it would ideal if friends on the forum could get together at any given point. Our houses are modified, we understand eachother, we could talk about so many other things rather than als (it's nice not to capitalize it), we could even switch roles on occasion and carer eachothers PALS, SAY.....we could even have our own inside jokes....we DO get it! Hang in there. I know this doesn't answer your question, but sending Big Hugs anyway! Stop on in if you're ever in MN!
 
Dani-
I can relate to what I think you are saying; in fact, I took some time to think about this & I had a "lightbulb moment". I too have been struggling to cope with the changing roles lately (as we all do at different times). Although I have 20yrs. on you & my babies are grown-up, this is what I came up with:

First, just having a baby will change your relationship (as any parent knows!). I can remember wishing for the "spontaneity" back - whether it was for meeting for coffee or a drink; last minute dinner plans or a weekend getaway; or even a morning snuggle in bed turning into something else!:wink: (which you know doesn't happen when baby is hungry!) We always heard "you have to plan a date night." That always sounded good, until I had to line up a babysitter (always difficult to find) or found I was too tired after a trying day (baby sick, no nap, etc.) Sometimes I felt like all the planning & organizing was too much trouble, too much work.

On top of this, you are having to deal with all the issues of Laurence. ALS will change your relationship, I'm learning. I am missing our old life, too. It is human nature, I think, to want to keep things as they are. But, we know the reality is that life changes. And when we have no control over these changes, it is hard & scary.

We have discussed before the idea of "surrender". Not to mean giving up, losing; but to give in (to the struggle) & to accept. This is hard- I know- but just like I learned when I was a new mother- now I do have to plan things, it will be work, but it will also be worth the effort.

Some suggestions (you may have already thought of these & done them):
Since Laurence is still working, try getting a babysitter & meet him for lunch, or better yet, after work for those drinks & an early dinner. Giving yourself those hours in between "doing things for him" & having your "date" might help to make it seem more like meeting him on equal terms.
You could do lunch dates with your girl friends too. Or, if others have babies, arrange "play dates". (do you do these in the UK?)

As for coping, I'm still working on this- I think it is an ongoing process. Just when I think I'm doing good, that I have it figured out- BAM! I'm hit in the face with something else.
This is what I know for sure for me: 1) acknowledgment- writing in a journal helps me so much more than just mulling it over in my mind; it helps me to go back over & read what I was thinking (sometimes saying "that was stupid!"); 2) permission to mourn- I've come to realize in my effort to be positive & upbeat, I was ignoring my feelings of loss, my feelings of sadness. Just as my spouse needs to mourn each loss that comes along, I have to acknowledge & mourn mine. When I do that, whether it is have a good cry or talk to someone (or, usually both) I can move forward a little easier; 3) open & honest talks with my spouse- (OK, I just heard the groan from the men!) Don't mean to be a cliche', but this is so important. It is what keeps the intimacy (and I don't necessarily mean the sex, but it can do that too!)

You are an intelligent, articulate & loving woman, Dani. (cute & sassy too!)
From my vantage point, you are doing very well with all you have to cope with.
Just remember, you don't have to be all things at all times to all people!
 
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I know exactly what you are talking about. You may not feel burdened by the care duties and may really feel comfortable doing them. However, after changing someone's diaper, giving them a bath, and doing all those things can totally hamper your sexual desire. It's hard to make that switch in your brain.

This business about doing everything for your spouse because they're dying can be hard. They're the ones that are sick, dying, etc can get old. May sound selfish, but it's very common and normal. You can not help the way you feel.

That being said, can you get some intimacy back at all? Planning romantic dinners, special time together? Are you still in love? Are you feeling burdened by all that you feel is required of you? Are you accepting of what your life may be like? Perhaps there is some counseling you can get to deal with these feelings. We were very lucky to have had some awesome family counseling. I hope you are able to discuss these things with your lover. Perhaps it's something that you guys can work on together. Communication is something I stress big time. Very important.

Big hugs to you
 
Dear All, many thanks for all your thoughts and suggestions. You are a wise bunch. I think our problem is not 'intimacy' we are still very much in love and are excited by one another (we do argue due to different temperaments, but we have always done that ;0).

It is just a practical day to day stuff I feel I need to be liberated from in order to enjoy the time with my partner. And you are right, having our son was bound to have an impact on spontaneity. There is a sense of mourning, and I sometimes resent all those people complaining about this and that not realising they are having it pretty good. But I know I could have been one of them, if the circumstance were different. I know resentment is not constructive, but at times just can not help it...

Interesting to see mostly women replied to this.

Dani
 
I'd like to thank you Dani for being so open with your feelings as your voice has now opened my ears a little to what the others have said. I am so angry and resentful at the moment and feel each day not as a new beginning but what will rare its ugly head today, as Mare said I think I have covered everything, then life just smacks you back down with something else you need to deal with. I sometimes feel how much can one peson deal with, but then we get over that hurdle just to endure the next. Only the other day we were talking about things we miss, just the simple things we use to take for granted, feeling him close to me in bed, now we feel miles apart although we are still in the same bed, holding hands whilst walking silly things i suppose to most but I really miss them. I am so grateful for this forum and the honest, caring and sharing people i have had the opportunity to meet, because of them and you I know i'm not alone. I hope you can both work something out so that you can enjoy what you have with each other. hugs xxAng
 
Ang-
I miss those things, too; and I don't think they are silly! Snuggling on the sofa while watching TV (now he is in his recliner as I sit on the sofa); we would always hold hands while walking (still hold his hand while in the PWC as often as I can though!); he always opened the doors for me (now I open the doors for him). Can't focus on what we don't have- not helpful- so, I'm glad to have the recliner because it gives him so much comfort & helps so much; grateful to the loaner closet for the scooter & PWC so we can take those "walks/scoots" and hold hands; and, I don't really mind opening the doors!

And, that was my point to Dani- coping can be as simple as just acknowledging these feelings, talking about them with your spouse/partner, and sharing here with people who are experiencing the same things. It is comforting for me to know I am not alone.

Dani-
I find myself being "annoyed" by people who complain about their ailments ("Oh, I had surgery on my knee & it is so hard getting back to where I was"- I'm thinking at least you can get back there!) or, by someone who responds to Jim's telling them he has ALS by saying "I'm having these aches & pains too. It's tough getting old." REALLY! :shock:
Jim is much more tolerant of these comments- he can just let them roll off his back.
I think we all go through these feelings at times- just part of anger maybe? part of the grief process? As long as you don't get stuck there-

And, the day to day stuff "liberation"- ahhhhh! This is so key, I think. And, so hard to do.
In the first year after diagnosed, you remember reading or people saying how important it was to get help? Funny, but I always equated that with getting help for my PALS- home care to help with dressing or showering, etc. Help when he was more advanced; when someone had to be here at all times. I never really thought about getting help for me & my "chores" that I have to accomplish each day or week. After all, I can do them.

But I am now doing what I did before & what Jim would do- (you have the addition of Stanley- a joy yes, and also time consuming!) Recently, in a conversation, Jim said "I'm alone alot." (This is when I am home but he is downstairs & I am upstairs doing laundry, or in the kitchen making dinner, or doing the dishes. ) I was so sad; this is not how I want him to feel. I thought I was setting aside the things that weren't important, but even the chores that HAD to be done were keeping me from time I could be with him.

So I have arranged for help- a little at a time. And, I think it is so wise of you to realize this; there is nothing more important than nuturing your relationship.
And for the record, don't worry, everyone argues occasionally. That's why make-up sex is so good! :wink: And the "old timers" are still very much in love & very excited by each other, too! :shock:
 
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