Hello

[rachelg]

Hello to you all

I have checked this forum daily for a long long time. I never post. I feel "rude" suddenly posting after my lack of contribution. Can I join you for some support?

I know Dani and she knows our story.

Tonight, I feel so sad. My husband Mark has bulbar onset MND. He has no movement left at all, no speech, he sleeps a lot of the time. He has had a trache for 18 months though only vents at night and maybe for a couple of hours during the day.

Life is tough but we cope. I have carer help for 2 hours each morning.

I absolutely adore my husband but as I am sat here I have a feeling of overwhelming sadness and lonliness and wonder how we ended up like this.

I miss talking for hours on end to Mark, I miss his strong arms around me, I miss our life.

The strength and courage I see here everyday helps me enormously and wonder if I could join in.

Thank you
RACH

 

[Al]

Glad to have you aboard Rach. Sorry about your husband. Hope we can be of some comfort.

AL.

 

[momap53]

Welcome aboard Rach, so sorry you're feeing alone. You'll find lots of support here.

 

[Felica]

Hi Rach so sorry you have to be here My ALS started with bulbar as well. My husband is still in denial and we are throwing everything in the book at it. With. No results yet. I know eventually he will be where you are now. My heart goes out to you. I sit and cry as well how did we get here. there are no answers. Just hold on every chance you get . You will find a lot of support here. You can scream rant rave and cry all you want. We will listen and be here for you when you need a smile. Come to tea.
Hugs hugs and more hugs
Felica

 

[joni51]

Rach, you don't need to ask to join in, everyone is welcome, sorry about the lonliness, I feel the same way you do, my husband is Bulbar, and well he can't talk, and it has affected his mind, so it is just not the same. I f he uses the Ipad it is just something trivial..

 

[cervus]

Hello Rach. Don't feel bad about not having posted before now. Most of us lurked before we posted! I'm so sorry you're going through this and feeling those emotions. It would be strange if you didn't. I completely understand how you feel although when I still had Bob with me, I didn't miss "us" even though he couldn't walk, talk, or eat orally. He still had some use of his right hand before he died which was a huge blessing as he could still communicate somewhat using an IPad and also just spelling words on his leg. It's been 15 1/2 weeks since he died and I miss him more and more each day. My love for him seems to continue to grow after having been married for over 30 years. I now miss "us", I miss him so much. As hard as it is, try to find the joy of being together as much as possible, in whatever capacity you feel most comfortable with. You sound like you're a loving, caring wife providing all the care you possibly can. Feel free to write if you ever need to talk. Sending you warm thoughts. Yasmin

 

[Barbie]

welcome Rach, we will all be here for youwhen ever you need us. Believe me, we all understand how you are feeling.

 

[susanf]

Welcome Rac, I have bulbar too. Hang out here when your lonely and need to talk. Many wonderful, supportive people here

 

[Okie2]

Welcome, pull up a seat and hang on. Sorry you find yourself here, but here is where you can find some comfort.

 

[tdamess]

hi rach , welcome hope you are having a better day today my dil said the same thing she misses his hugs ,

 

[Danijela]

Dear Rachel,

glad you have posted. I can understand the loneliness even though as you know Laurence and I are still able to communicate and he is more active than your Mark. But because he is in hospital at the moment I am having a taste of what it would be not having him around - and it is so lonely. The place is empty, his equipment not being used...I took our son to see him in hospital yesterday and as soon as he saw the wheelchair really far in the distance, at the bottom of this long corridor, he started to ran so fast, shouting 'dada!' We were both in tears...And he was screaming when we had to leave, not wanting to leave Laurence behind.

Rachel, have you ever thought of getting more help in? I know it seems strange to suggest it while your post is actually about wanting to BE with Mark, but I am thinking along the lines of perhaps freeing up some care time to spend time with Mark doing more 'social' thiings. Even if he is unable to communicate he may appreciate a change of scenery, or just some time which is not about his care needs. Is he still able to use eyegaze?

Thinking of you, Dani

 

[rachelg]

Thank you all for your warm welcome.

Mark has an eyegaze system so we do manage to communicate, though lately his sentences are muddled so I am guessing he is having some mild cognitive issues, he lets me know his basic needs ie. suction, loo etc but thats about it at the moment.

Dani, me and the kids think we have convinced him to let us all take him out on Wednesday to do a bit of christmas shopping, hoping that the change of scenery will do him good.

Any news on when Laurence will be home?

Thank you all again, its comforting to know I am not alone. I hope to visit more often and also offer any advise to others that I have gained on this journey.

RACH

 

[Carole]

Hello Rach
Like you I've hung around the posts for a while and not posted but as you live so near to me I felt like a kindred spirit.
I'm feel so sorry to hear your story and how hard it is for you both.

My husband was diagnosed with ALS in September 2010 last year after two years of symptoms that began shortly after back surgery in 2008. By then he was using a wheelchair and now he has no mobility and has been in respiratory failure since November 2010. He uses a bipap vent all night and increasingly now during the day and I deal with all his care needs. Having said all that I know that I'm so lucky that he is still able to speak and we can still find things to laugh at.
It did strike a cord when you wondered how things got to this - it's very lonely at times and it's good to have the warmth and support of others that understand how that feels

I hope you manage to get your husband out Christmas shopping.
Sending love to you and all Cals
Best wishes
Carole

 

[Mrs C]

Although ALS is a horrible nasty disease, I feel more fortunate to be dealing with this than cancer. My brother, father, grandmother, and mother-in-law, all passed from one form of cancer or another within 6 mos of diagnosis. Do I hate ALS? YESYESYES! but would I rather it be terminal cancer? NO WAY. We have been given the gift of time in comparison to what I have been through. My step-son passed from CF, so I do appreciate the big picture as well. Make the best of your time. Listen to music, movies, read to him. There are many ways to get your "us" back...it will just be different on the outside.....same beauty on the inside. Take care and keep coming to this site for comfort...this is a great group I come to every day.

 

[KellyGirl]

Hi Rach, Although I am no longer married and cannot imagine what your situation would be like, I am a lurker, lol...I like to listen in and learn. It gives me comfort just to hear others ideas and stories who are in the same situation as I am. I wish there was a support group in my area but there is not, but this works just as well for me especially because I cannot speak anymore and the computer is my only means of communication except for my granddaughters and my own made-up sign language (she is 3 and a half) . I can still drive and get around pretty good unless there are stairs involved but I've already told my daughter if I'm stuck in a wheelchair please take me outside as often as possible and to see new things when there's a chance too......So you should take your husband shopping, even just watching people can be interesting at times and a change of pace is good for anyone.....