Never really prepared

[Mrs C]

Although we are told of the obvious outcome of this horrible disease, we are also told about "those that live much longer." Naturally, we cling to the positive, the hope that OUR loved one is going to be one of those. As things start out with light symptoms, you make those smaller adjustments, go to every clinic appointment, and basically go through life like not much has really changed. When things start getting worse and scarier you tend to become more dependent on your doctors and ALS Clinic team, yet turn down offers of friends and family help and spot because "nah, thanks, we'll be fine..." You continue to go through your daily life basically in denial. Every clinic appointment you come away with yet one more reason to stay positive "well, he is still eating, breathing, and talking on his own, so we're good with that...." And then after the PEG is placed you think "at least he is not losing weight anymore and everything he gets is healthy!" one thing after another happens and you keep adjusting: chair lift, lift chair, walker, wheelchair, etc. And then one awful day, what seems like out of the left field comes those words you do not want to hear "it's time to put him into hospice care. He might have up to 6 months or even less." WHAM-O!you look at each other, embrace, cry, repeat. All the while reviewing and reaffirming his advanced directive of to trache or not. You listen to more, demand justification, resolve to the facts and go home. The first thing was to inform family, siblings and children. You then realize you have so much more than a sad, unthinkable situation. You have now got the power of family, support, and strength, which will get you through and make his time left on this earth more at ease because he knows you and his children will be well taken care of after he is gone. But you know what?! IT STILL SUCKS!:-x We will cling to every last day, moment, and memory while doing everything we can to "just act like everything is normal, he's more at ease that way." it is not easy, but yet very rewarding. You laugh, talk, and even shed a few tears, trying to stay on the positive side; to now "prove that doctor wrong!" Man, I hate this disease.

 

[AKjo]

Mrs C, By sharing your recent news you have put my worst fears into words. My thoughts and prayers are with you tonight.

 

[CAHPAH]

Mrs C
Thank you for opening you heart. Your words ring fimilar in my ears. There is still room for positive outlook, my wife has been on hospice care for 14 months now and I don't believe we will be missing her anytime soon. You just never know. God bless and keep you.

 

[hjlindley]

My heart goes out to you. One day at a time, and try not to let this horrible disease be everything every day.

 

[cervus]

Enjoy each minute with each other and create as many positive memories as possible. Just take things one day at a time. I'm not sure if you have a wheelchair accessible vehicle. We rented one every week for the last few weeks of Bob's life and did things outside of the house - drives through parks, museums, movies - anything Bob and the girls and I felt like. I'm so glad we did. Love, laugh, cry, talk, joke - all of that. It's all good! Yasmin

 

[Pandora]

I understand! We didn't even get a 6 month warning, we were told hospice is somthing
U may want to start looking at, and 6 hours later, my husband was gone. Cherish what u have left
Love every moment, it could be just hours. I hope u get more time then we did, I miss him minute of everyday!

 

[ccurths]

You put into words what our life has been like the last few years. I have been told it's time for hospice because of my breathing, my arms and hands weak but yet I still walk, although my legs are starting to be affected. It's been one loss after another, yet through my faith I find the strength to go on.

 

[Susan10]

I'd strongly encourage you to get hospice if it's been suggested. When I was caregiver for my mom, she passed the day before the nurse put the order in her record. That meant we didn't have access to the grief counseling that we so badly needed. My child was only 12 and very close to her gramma. I found some counseling for her through a free service that was set up after the OKC bombing. They were very helpful. As CAHPAH said, you never know how long or short the time will be. Take advantage! I love the idea of doing things outside of the house. I hope I'll remember this when I get there.

You're right, it's a slow process of saying good-bye to little pieces of ourselves. I remember the day, 2-3 months before diagnosis, when I realized that what I lost was never coming back.

 

[jwife]

Thoughts and prayers are with you and your family. You have the right attitude. Enjoy every moment. Live, love, laugh. Those memories are what will sustain you when the time for grieving comes. I lost my husband in August and would give anything to have him back. Just to spend one more day holding him and talking with him. You are right. ALS is a nasty, dirty monster!
Janis

 

[maryhahnward]

Mrs. C,

Thank you for sharing. It is a heartbreaking disease on so many levels. If it weren't for those who share on this forum it would be so much more difficult.

 

[Mrs C]

It was my birthday last August when he finally had to tell me we couldn't take that motorcycle ride we had planned, because of his weakness. It has been downhill from there. I then learned to drive our bike, hoping to take him on a ride this summer. He has given me literally THOUSANDS of miles of life, love, and happiness, I just wanted to give him ONE ride in return.....I just hope I get that one last ride with my soul mate.

 

[Susan10]

My brother is a biker too & they recently converted their 2 wheeler Harley into a trike for additional stability. Something about his wife not wanting to be on it if he had to lay it down...lol. Anyway, you might check into that to see if it would help!

 

[Mrs C]

Thanks. Do stay positive...it is the best medicine!

 

[Mrs C]

Susan10, we converted our Gold Wing to a trike last June. he just didn't have the strength to shift with the left foot, OR handle the steering. It really hit home because he lives to ride! When we were not riding in the nice weather, we were watching ,ovies of our trips in the winter....it was a very special connection for us both to ride the Rockies or Million Dollar Highway on our bike, making that close connection to the world our Creator provided for us. Nothing like it.