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christal

New member
Joined
Sep 28, 2010
Messages
1
Reason
CALS
Diagnosis
04/2010
Country
US
State
AR
City
harrison
well i am 32, my husband is also and he has rapidly progressing als. he showed symptoms just as our daughter was born last september, in april this year he was diagnosed. we have a 3 year old boy and maggie just turned one. i am an RN from Australia, and this should make it all easier, but our marriage has problems, now we are no longer together as husband and wife for many reasons, but i am here, caring for him. he lost his job after diagnosis when our baby was 2 weeks old. with no health insurance we returned to australia for a few months where he had a peg inserted and resting splints for hands and legs custom made, bipap sorted and phsyio techniques learned. yesterday he used a urinal for the first time. he fell two days ago and needed 6 staples to the back of his head. he is in a motorized wheelchair and I do all his adl's. (shower assist ect). i feel broken. i am sad and i want it to end. i want him to have peace, which he does not have with me, our children give him the most joy and love and above all, he will always be a better more loving man than myself. if there is anyone else out there with young ones like me, it would be nice to chat. although from what i hear everyone is totally in love with their spouse, totally devoted and their world will be forever devistated if they die. this is not me.
 
Hi Cristal,

welcome to the forum. I am 38, partner 43, son 9 months old.

I think everyone has a rough ride with this, but sometimes it is difficult to see what is a result of MND/changing circumstances/staring at death all the time and what our relationships with our partners would be anyway, without MND. Balancing the role of carer with that of a spouse/partner/lover/friend is a real challenge, and can lead to some dark places.
I often feel exhausted with it all. I feel like I am suddenly an 80 year old woman due to having to slow down in order for my partner to keep up, and sometimes I feel it is not fair, it is not me. Other times it does not seem too bad. Still, I do envy people of my age who have not given a single thought to illness and death, not even where their parents are concerned and certainly not in relation to their partners.

All the best,

Dani
 
Dear Cristal,

I am very sorry for your circumstances, both your husband's disease as well as your unhappy marriage. I really doubt you are the only one, I know of another woman, but in checking to find her learned she hasn't been here in a month. Just continue to be honest, as you have been, and probably you will be "found" by someone who shares similar struggles.

Dani is so lovely and open in sharing her own struggles, I'm glad she has met you, and you, her. I have only one thought to share at this time. Your husband as you say, gets so much joy from the children. In doing this very demanding care for him, you are giving a huge gift of love to your children. They will remember--especially the three year old--their father, and will doubtless be helped later by having spent this time with him, no matter how hard. For their sake in their future memories, try to act as loving as possible now, while you have this chance. It may well not last much longer.

I hope, Cristal, that you find later it was also good for you to have done your best, personally. Hang in there, and know that we respect you for doing this... and we are grateful. Kindness does come round, and I pray it will come to you one day and you will know happiness.

Blessings to you,
Ann
 
You aren't alone Christal. We do not live in paradise at my house, nor did we prior to the diagnosis. There are several families here with young children. In particular, one family has had the same struggles you are experiencing.

Having been to Harrison on numerous occassions, I imagine you are lonely, too. You are fairly isolated. On the other hand, you probably have a community of people that depend on each other. Reach out and let people help you. I've been amazed at the kindness of friends, family and even strangers.

You will find the forum a wonderful place to find answers to questions, share experiences and vent frustrations. I truly do not know how I would cope without these amazing people.
 
Christal

We were 33 when my PALS got his DX. At tjhe time our kids were 9, 8 w/ CP, and 6. Not qite as yourg as yours. We all struggled. This is a riough ride, but with prayer and some down time you will get through it.

I fully agree w/ Ann about htis being a gift to your kids. If you have to pin your thoughts on that.

Do you have a church? Or neighbors that may be willing to help[ watch the kids and your PALS for a few hrs a week so that you could get out for a breath of air? We used a batt. oper doorbel. We used elactic through the back, like a braceleyt around his arm and we took the bell part outside. That way we(the kids and I) could be outside and get a little peace and air while he was still in the house.

My prayers are with you all. feel free to contact me if you would like to talk or vent.

God Bless
cris
 
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