Some hard decisions made

[evansmom99]

Hello all
Staring out on a good point, my husband now understands he has ALS and that the diagnosis was not out of a hat or theory. One night I went over everything with him and explained all that I knew, he finally agreed to engage in support and work with his Dr's. and local ALS group. He is going to go with me to a day long meeting to discuss the in's and out's of ALS, so that hurdle is for a time is over and I had to come to terms with some things myself.
I had to admit to myself that I will be unable to care for him once he is unable to care for himself. Due to my disabilities that really limit my lifting, walking and moving about it is clear I am in no position to roll him, transfer, or do much mechanical things for him. Once that time comes Hospice will be address since he is totally againist intervention for breathing and at this point a peg should he need it. I have noted a decrease in his ability to throw a ball to son, more mouth breathing, and difficulty with walking, where he does a sort of paddle walk rather than heel toe. His dementia is also a problem, he does not remember things and will look at you with vacant eyes when someone is talking to him. The outburst of anger are getting more and more frequent so far just with what verbal he has left. I am sure some is out of frustration and fear but he will not admit it.
My 11 yo son has been great and can walk away from a outburst even with directed toward him, and has been reassured that the priority of his is to be a kid and not a caretaker. We all like the idea of hospice since we have had positive prior experience with it as well as know one of the Hospice nurses from church.
In my heart I feel like I am not living up to my marriage vows to have and to hold, by not turning him, lifting him, bathing, cleaning etc. I feel like I have failed him, and often think well try it anyway, but on the other hand I have to be clear about what I can and can not do for my son, since it will be up to me to be his mom and dad in the future.
Thanks for listening you all are my hero's since you can and do so much for your loved one.
Blessings

 

[LizT]

I am so sorry things have turned out this way. Please dont feel like you are not living up to your vows! You are. Because of, as you said, your own disabilities, you are literally unable to do the physical cares for your husband. This is not your fault. What you are doing is making sure he will be well taken care of because you are unable to do so yourself. IMO that is living up to your vows. If you could do it, you would. But you simply cannot so you will arrange something else for him.
Let me ask you this- Do you think your husband is not living up to his vows because of the disabilities he is encountering now? Of course not. Its no different for you. You may not have issues as dibilitating as ALS, but its still dibilitating.
I hope the best for you and your husband and son.

 

[brooksea]

Good point Liz! We ALL have our limitations. Mentally, physically and emotionally.

evansmom99, sorry about your son! It's so sad to have children involved. Our son just turned 11. I, also, do not allow our son to care for my husband, unless our son volunteers to do it.

Good luck with all your plans!

 

[Miss]

My son just turned 17 this week. I don't have him taking care of my husband's personal needs. I'll occassionally get him to "watch" him for a little while if I need to bathe, run to a neighbors, do something in the back yard, etc. He might give him a bite of something or a drink, but as I said, never intimate personal care. It's hard enough to watch the deterioration. He doesn't need to have a hands on experience with it. We are very, very fortunate that it's not necessary. For some, there is no choice. I'm grateful.

 

[evansmom99]

Thank you all for your kind words. I do love him more than I can say but angry as hell at this ALS, since it seems to be such a progression of symptons that make people loose more and more and be aware of it while it is going on. I wish I could take away his fear and assure him things will be okay... In the mean time I will continue to love him through the menory lapses, agitation, angry outbursts, and having to be his voice. In many ways he has handled it much better tham I think I would oh have. Bless him...even when I get frustrated.

 

[epkennedy]

Really couldn't have said it better myself. I totally know what you are gong through. Thank goodness for this forum! Hugs

 

[kmendsley]

Quite the contrary...bless you for your ability to have enough courage to say you can't do it by yourself. Saying this now and making arragements now with everyone involved makes it much easier of a transition for all involved. You can't care for others until you care for yourself! Good luck to you and your family.