Wednesday, September 23, 2009


On Monday I switched Hospice Agencies. It's so strange how they all work under the same Medicare guidelines, but have different rules. One said they can't give us some supplies, another said "no problem". One covered all Mike's medications, the other doesn't. We'll wait and see how this goes. I had to call them today already. As Mike was getting into bed last night, his toenail was almost ripped off. I felt bad because Brandon and my brother were there alone, so I could attend my monthly Early Onset support dinner. Apparantly the nail got caught on something and it started bleeding bad. I just don't want any infections to set in.
Mike had a little cough the other day and a low grade fever. This has happened a few times over the last couple of months and I begin to wonder if his swallowing is becoming more difficult.
I have also had to face another reality recently. I have met numerous families over the years, with LO's with EOAD. Many of them were diagnosed right around the time Mike was, if not later. A number of these people have recently passed away. I am comforted in knowing that Mike is still here with us, but at the same time, I am ocassionally jolted into the reality of this disease and I know at some point, Mike too will pass. I am thankful everyday that I can TRULY say in my heart that I have done everything I possibly can for him. I know he his comfortable and he KNOWS how much he is loved. I will have no regrets.


trish said...


I hope you are surviving with Courney away at college. You are still my caregiver hero! I believe the more love you give the longer they will be with us.

On another note Bob and I will be attending a medical conference next week in St. Louis called the Leonard Berg Symposium. This medical conference will be about the DIAN Study (dominated inheirited Alzheimer's disease). We will be joining another couple who have the PS1 mutation. If I learn anything interesting that may benifit our children I will let you know.

Take care,

Ashley Barton said...

I took care of my dad who had dementia for over nine years with the help of an"angel" a lady from Jamaica. It was the most devasting nine years of my life. I watched my father fade away from me during those years. I am so glad that I never put him in a facility. I am so proud of you and your children for what you have done and continue to do with Mike. God Bless you all.