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I don't know if this will be unique to this group or not but here goes. My husband and I will be married 10 years this August. On our 1 month Anniversary he was diagnosed with Primary Progressive Multiple Sclerosis (MS). At that time it was affecting his vision (double) and some numbness. He was 41 at the time and I was 47. I have two children from a previous marriage. We muddled through all of that and 9 joint replacements for him and kids now young adults with children of their own we seemed to hit a "normal" life. He is on Social Security Disability and works part time as a greeter at WalMart about 15 miles from our home. He at one time was a CPA and ran marathons. I work full time as a bookkeeper. My hubby is deaf in one ear and we joke that he has selective hearing in the other.
Life was chugging along until about 6 months ago I started noticing small changes. He used to read everything he could get his hands on...now he doesn't at all. We used to watch talk shows at night...now he wanders away from them. Cooking shows or Discovery Channel shows are still of interest to him. He started to look at me as if I was speaking a foreign language when I speak to him. I am now either really speaking slow or one or two directions. He finally fessed up that he can't understand what he reads and on TV they speak to fast for him to understand. Also, speaking person to person you have to speak really slow and emphasize your words. I was hoping that part was the MS and leisons in that part of the brain. But then there were other things - washing the dishes in cold water with no soap, leaving lights and TV's leaving the house and throwing the clothes on the floor in the closet from the dryer when they used to get hung up.
We saw his neurologist on Monday and here is where the care taking really ramps up. There are less leisons on his brain than before but his brain is in atrophy (shrinking) with two large spaces of fluid rather than brain matter. In other words he has MS with mild to mid Alzheimer. My hubby will be 51 this year in November and I will be 57 in August. So now I really have become my hubbys keeper. I already pay all the bills and answer any calls or make calls on the phone cause he can't do it. I have started doing the cooking or team cooking since he caught a pan of hamburgers on fire when I asked him to flip the burgers and he turn the heat up max instead. Either his mom,75, or I go with him to the doctor appointments. And now any unfamiliar place I do the driving. His work is 15 miles away from our small town and it is county road all the way. He knows his route but I am still nervous about it. His mom says he should be OK. Ugggghhh!!!
The doctor says that probably within a year he won't be able to work because he is already having problems when people talk to him. Also, he will most likely need 24/7 care within 2 years or so. On his days off I have to remind him to take a shower and get dressed because usually he just sleeps all day when I am at work. It is exhausting to him when he does work so he needs to catch up on sleep.
So, that is where I am at right now. I have to be careful when I talk to his mom...he is her only child and I understand that has to be really hard on her. She has a tendency to blame herself and I have told her not to. She has offered to help take care of him when he needs it, if she can. My biggest fear is what are we facing in behavior, how do you know when it isn't safe to be home alone or even drive??? I have done some preliminary reading but it speaks in general terms. I have already gotten the Power of Attorney papers for Medical and General taken care of for when they are needed. I am an only child and I had to take care of my Mom and her affairs and nursing home etc. Her demons were Parkinson and Congestive Heart Failure. So, I have already had a lesson in that but not this as a spouse with a younger spouse eventually heading to a care facility??? I am a voluntary EMT for our neighboring rescue squad cause between my mom and hubby they were called quite frequently. But, the Alzheimer thing is a new one on me.
Thanks for listening and any suggestions will be greatly appreciated. Especially with a mother in law who wants to bury her head in the sand. I am not trying to push things but I just don't like being blindsided!