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Yes! I already received a call from their social worker and she wants some of their volunteers to bring me up a few meals to ensure I am eating properly---did I die and go to heaven already? DH is very sad with finally admitting he no longer wishes to fight this ugly disease. He is so strong and strong willed I am sure it was difficult to accept. But he did--it was completely his decision. We are also having a Chaplin stop by to talk with us--another God send! God is good!
(((Cyn and DH))))), my thoughts and prayers are with you. But know this ( and I am sure you do), that you and DH no longer have to make this journey alone.
I'm so glad to hear that those hospice volunteers will help take care of you, too. Hopefully that will relieve your burdens some, and let you spend your time with your DH....
Location: We_tside PNW (Columbia Gorge) / CO / SA TX / Thailand
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Originally Posted by cynwldkat
I will be very honest with all of you here--not sure if I could pull this off without each and every one of your support!
...I am so blessed and again I thank you all! Wish I had some way to teach all caregivers how to reach out online.
BTW, Hospice should be very helpful. Tough choices, Hospice is very experienced and usually excellent.
Maybe you will like to volunteer with them after this ordeal. I find it very rewarding to do so. Having done 30+ yrs of caregiving in my free time (disabled parent), and many times attended good friends during end of life, I felt it was valuable experience to share. Takes a certain person, and the right one can really help calm the family (which is seldom calm).
It was, at least for us, an extremely difficult day, one of the hardest, because it's a mental and emotional turning point.
But once done, it's such a relief to know you'll no longer have all the responsibility and hard work involved in 24/7 care.
You've done more than well and have more than earned every pound of the load coming off your shoulders.
Tears are flowing--thank you all. DH still wants to go to clinic and to his own doctor and I just don't know how to tell him it isn't feasible without transportation of our own. Maybe something will happen soon and we will get that van. Fingers crossed!
Tears are flowing--thank you all. DH still wants to go to clinic and to his own doctor and I just don't know how to tell him it isn't feasible without transportation of our own. Maybe something will happen soon and we will get that van. Fingers crossed!
Maybe the hospice social worker can help DH process, understand and accept the reality issues that you are presented with cyn. I would think the social worker could be very helpful in this regard...so it isn't as if you are saying "No" to him.....it would be part of his acceptance of his limits and expectations.....Painful but really necessary and overdue.
Does your husband understand that it's possible that you will have to pay out of pocket to go to his regular doctor and clinic? Double check with your hospice people to be sure but that's the way it was with us in Florida.
In NYS that same doctor was part of the plan so a bit different.
It might take a few days for everything to be understood....maybe even more for some things!
Maybe the hospice social worker can help DH process, understand and accept the reality issues that you are presented with cyn. I would think the social worker could be very helpful in this regard...so it isn't as if you are saying "No" to him.....it would be part of his acceptance of his limits and expectations.....Painful but really necessary and overdue.
Sending good thoughts your way. These are the hard times.....I will keep DH and you in my prayerful heart. I hope that you both find comfort in the chaplain's services and in all the services provided by hospice.....to ease you thru this phase of ALS.
I was glad that the nutritionist saw you had been neglecting yourself and sent over extra food for you. Its nice to see they are treating the both of you......and attending to both.
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DH is very sad with finally admitting he no longer wishes to fight this ugly disease. He is so strong and strong willed I am sure it was difficult to accept. But he did--it was completely his decision. We are also having a Chaplin stop by to talk with us--another God send! God is good!
Maybe something will happen soon and we will get that van. Fingers crossed!
