This is simply exhausting.....

[KrisS]

I too have been longing for the simple pleasures of the past, dreading the future and struggling through the present. I miss the life we had together and get very sad when something, anything, triggers a memory of our pre-ALS life and I am reminded that we will never again share those special moments. I do try to make the most of the present. I also have set up a twin bed next to the hospital bed, and when they are pushed together we can snuggle and it offers both of us comfort. It is very different than it used to be...but I'll take what I can get. I mourn for all we have lost every day. It is so hard to be upbeat and give him the best possible care when my heart hurts so much. For his sake, I do my best, not always successful. I am so sorry life is like this for so many of us. So painful!

 

[lakelover]

My husband and I also loved to dance. Now the only dance we do is the shuffle down the hall from the hospital bed to the recliner. The thing I miss the most was every night we would go to bed spooning with his arm around my waist. I set up his hospital bed in the guest bedroom, moved the queen bed right beside it making both beds the same height. I sleep on my side with my hand holding his hand so I am still able to touch him. He is losing his voice so I know it is only a matter of time before I will no longer be able to hear him saying I love you. You never know how this disease will progress. My husband was working until Christmas. This disease reared it ugly head and has decided to take everything away in a matter of months. Each loss I feel our life as we know it slipping away.

 

[rictak in IA]

Patty got her hospital bed on New Years Eve day this past year, I went out that day and borrowed a twin bed for myself. We had to buy 2 twin sheet sets, so I had a friend sew the 2 twin flat sheets together. I built a split headboard so her bed can travel up and down while mine stays. The whole effect looks a whole lot like one king bed, and at night I have always been able to be right by her. Before her new bed we couldn't even sleep in the same room.

I have said the same thing to friends of mine before about the slow dancing. It was always me who didn't want to dance...

 

[ottawa girl]

Spooning. That's what I miss!

For 25 years, we fell asleep close, cozy and snug every night. Now, with my gimpy arm, additional pillows to support it, cumbersome hand splint with extra cushion to support it, spastic leg with its own pillow to support it, spooning is impossible. We can at least touch toes before drifting off... it's nice, but I sure miss the old days!

 

[patgayle]

Thanks for all the ideas about single beds. Not a possibility as we have night caregivers for T, he is unable to sleep more than 2 hours and often needs to get up every half hour or so, either because he is uncomfortable or needs to urinate. He wont urinate into the little plastic urinal while in bed - too uncomfortable even when the head of the bed is raised or if he goes he has to again quite quickly. He drinks masses of water - says all his meds makes him have a dry mouth.

 

[kjensencaregiver]

My dad has ALS and I am his caregiver, he was diagnosed the end of June 2012. He has feeding tube, cannot eat/drink by mouth, has oxygen and a bi-pap machine. Uses a walker, has difficulty getting around and using his hands and constantly is drooling and spitting due to excessive saliva. He is 83 years old and comments on how he wants to die, and just give him a knife, pills etc. It is very upsetting and stressful, is it time for Hospice?

 

[retiredmus2010]

Yes~~~~ You should at the very least make a call to them and allow them to come to the home and evaluate the situation. I am so sorry you have to experience this with your father. Do you attend an ALS clinic near you? There are medications out there to help with the excessive saliva and also an antidepressant for his anxiety and depression. I am sure it is not encouraging to hear him voicing his wish to die. Hospice can be a help to YOU as well. Good luck. There are wonderful caring people who are on this site. You have come to the right place. Put Hospice in the Search section of this site and see what you can locate.

 

[kjensencaregiver]

Thank you, yes he is on several antidepressants. I wish I would have found this site when he was first diagnosed. No we do not attend an ALS Clinic, we did go to the University of
Chicago for a second opinion, they have an ALS Clinic there but my dad does not want to
go anywhere other than the hospital he has gone to all his life and the doctors that have admitting rights there.

Everything as progressed so quickly. Hospice has come to explain to him but I don't think he quite understands. He does indicate that is what he wants, so I have to make that call and set it up. I'm just dreading doing it!

 

[judyroyalglenn]

Sorry Ruth and everyone else for the losses; they are tough and it's not easy Wishing everyone an abundance of grace, peace, and mercy! Much love ~ Judy

 

[MLRMLR]

Hi Ruth,

My husband also has been recently diagnosed and I'm already missing things. I do feel all alone and I'm scared too. My Husband put in for early retirerment and we will find out tomorrow. He started having symptoms October of last lear. Drop foot on left leg, weakness in his left arm, and falling. Now his right side has started . My step-Dad measured for an elevator chair seeing We have a house with lots of stairs. We are going to Mayo next week to see if maybe they are wrong. I'm so sad. I'm dying with him. I haven't had a day without crying since he was diagnosed. I don't want to be alone.
Vicki

 

[sunewun]

So sad for all our losses. Wishing you strength to make it through the trials. sherry

 

[milanumpa]

I HATE this disease. My husband has gotten,controlling and hovering and so angry. It hit his shoulders then arm then hands. J
This all alternates with praying and crying .weve been together 30 years but I married him last march to show him I will always be there. We lost our dreams of retirement and just having fun. It feels like we are both dying. My heart is broken for him. I and my daughter are the only interaction he will have. When dr rowin said 100 percent will progress to full Al's. that killed is spirit right there. My heart & love goes to everyone on thi board. It certainly seems like no one else could give a damn. Oh sorry just really bad day ( again ) love ya Mila

 

[poppies]

Hello. My husband was diagnosed with bulbar palsy with onset als just over a month ago, having had problems with speech for a year before that. I am the only person he has told about his diagnosis and he says he is not ready to tell anyone else, our children and his parents included. May I ask your advice? Having been through this yourself, how does one handle these early stages. My heart is breaking, but I so want to be strong and help him and everyone all I can.

 

[milanumpa]

I am hi voice of denial. I tell him only God knows really. Sometimes we yell and many times we,ve cried together. I've been 30 years with him and I'm terrified. I had to tell my close friends and family because I need support. But he doesn't really know. aA philosophies are goo first things first , one day at a time. I try to listen to my spirit, sometimes I just listen. Sometimes I tell him for every patient I seen given a wrong death estimate I'd be rich. I would tell a few people you can trust and tell them not to act like they know. We are both angry and disappointed . I am a nuse and seen lots of bad stuff, but this tops all of them. I've been trying to get him to enjoy 1 day at a time, but that's usually out the door in a few hours. I tell him I will take care of him as long as he lives. It's just so hard, hardly seeing my 89 yr old dad and grand kids as much. I only wish I had a magic wand for all us

 

[milanumpa]

You know to he person who's pal has to frequently urinate. They have what is called a condom or Texas catheter. It attaches to the penis like a condo and drains into bedside bag or foley bag.it shouldn't be uncomfortable. Love and courage to all. Mila