down day

[trusting]

My mom started with bulbar symptoms in 9/09, March 2010 she was diagnosed with ALS. Feeding tube in May. She has gone from walking a 1/2 mile with a walker and driving and being self care in beginning of May to being total care today. She can not speak, swallow, bear weight, or use her right hand and her left is fading fast. She is 70 and her 50th wedding anniversary is next month. We started using a hoyer lift yesterday and moved her bed into the living room. She was enrolled with hospice today. She needs so much care. We are in the process of trying to work out a care schedule. It is just so sad and emotionally draining at times. I love her so much and it is painful to see her like this. Through all the trials we smile and joke and have had some fun too. I don't know how long we can provide this level of care and I know it will only get more intense. Thanks for listening, just having a down day I guess.

 

[joelc]

I am very sorry about your moms decline. It is rough.
I have been in that condition for over a year now. With devices and technology it can be easier than you think to look after her. I wish you well!

 

[Marjorie R. Wilcox]

Just want to commend you on your care and loving and tell you you are doing all the right things. There is a special place in Heaven for you and your PALS. Hugs to you and all the support we can give.

 

[brooksea]

Good luck to your family! Hope things work out well for your mom's care.

 

[Blubear]

Hi trusting, welcome to the forum hun, so sorry that you had to find your way here with your mom having ALS. My father was diagnosed the same time as your mom. He has had a much slower rate of decline than your mom, but I do know that heartache that you are feeling. I think it is hands down the most cruel disease out there, and to watch our parent suffer hurts us to our core. What I do know, just from what you have written, is that you have been doing an excellent job with your mom! You have shown your love and incredible strength up until now, and I am sure that by the sounds of ya, you will be pushed beyond what you think your limit is, but you WILL adapt hun. Just make sure to not get to burned out. Easier said than done, I know, but you have got to always remember to take time for yourself in order to be able to continue to give your mom the love and strength she needs. Glad to hear hospice is on board at this point, that will be of help to you. Please know that we are all here as well, and we all understand what you are going through.
Hang Tough!
Kari