Hi Becca,
Haven't had time to check the posts in about a week. I'm a school bus driver and spring of the year brings many extra trips and things in addition to my normal schedule, being a taxi for my 10 yr old's lacrosse practices among other things. You know how it is.
Sorry to hear about the fall and glad that at least so far she seems ok. We had my mother back to Georgetown yesterday for a more extensive EMG. The progression rate seems so fast and obviously much faster than any of us would like. She doesn't have her bi-pap yet... I am curious about that. The respiratory folks just came out and set her up or did she have to have a sleep study or something so they would know how to adjust it? Mom is to be getting one, but we're waiting (impatiently too I might add..).
We want to get her a hospital bed, as it is not real comfortable sleeping in the reclining chair. They suggested we speak to the MDA people and perhaps get some tings from the loan closet there. I know nothing of that process, but will learn fast I am sure.
We're trying to face each day as it comes, not dwell on what will be and doing our best at keeping the flow of life as normal as possible. I've noticed with my mother that she is choosing softer foods and suddenly becomes "full" of the harder to chew/swallow foods. She's attempting to deny all of her symptoms and weaknesses so will not openly admit that the swallowing of foods is difficult, she simply suddenly declares she is "full".
Reality of the disease is beginning to set in with her now, which has me fearful of depression and how you combat that when the reason is so easily understood and in knowing the outcome? I became depressed after losing my first hubby to a heart attack and I was able to overcome that because I was only 36 and healthy and had a quality life to continue living... where can I point out the hope in life to my mother?
We're trying to make hte most of it... my oldest bro and I took her to the EMG and we all stopped for dinner on the way home. Made a few fun comments here and there and she told us we were being bad (which was funny 'cause he's 52 and I'm 46) and we told her "Nope, we're making memories that only we have". That did bring a smile and we reassure her she is not a burden on us and how much we value her as a person and mother. I know it hurts her to be dependent on us, and she is aware that we are taking time away from work, family, etc to see to her needs... but I think it does make a difference that at least presently, we are doing so willfully, not out of duty. The problem I see with it, is our other brother never stops in to say hello, doesn't call or offer assistance of any sort and lives the next house down. We all live on the same road.. within sight of one another. She's feeling that hurt too. Any experience in dealing with family members who need a good swift kick in the pants?
Stay strong Becca... and hang in there with me. I'll be coming to WI in a couple of years... maybe we can cross paths.
Mary
Haven't had time to check the posts in about a week. I'm a school bus driver and spring of the year brings many extra trips and things in addition to my normal schedule, being a taxi for my 10 yr old's lacrosse practices among other things. You know how it is.
Sorry to hear about the fall and glad that at least so far she seems ok. We had my mother back to Georgetown yesterday for a more extensive EMG. The progression rate seems so fast and obviously much faster than any of us would like. She doesn't have her bi-pap yet... I am curious about that. The respiratory folks just came out and set her up or did she have to have a sleep study or something so they would know how to adjust it? Mom is to be getting one, but we're waiting (impatiently too I might add..).
We want to get her a hospital bed, as it is not real comfortable sleeping in the reclining chair. They suggested we speak to the MDA people and perhaps get some tings from the loan closet there. I know nothing of that process, but will learn fast I am sure.
We're trying to face each day as it comes, not dwell on what will be and doing our best at keeping the flow of life as normal as possible. I've noticed with my mother that she is choosing softer foods and suddenly becomes "full" of the harder to chew/swallow foods. She's attempting to deny all of her symptoms and weaknesses so will not openly admit that the swallowing of foods is difficult, she simply suddenly declares she is "full".
Reality of the disease is beginning to set in with her now, which has me fearful of depression and how you combat that when the reason is so easily understood and in knowing the outcome? I became depressed after losing my first hubby to a heart attack and I was able to overcome that because I was only 36 and healthy and had a quality life to continue living... where can I point out the hope in life to my mother?
We're trying to make hte most of it... my oldest bro and I took her to the EMG and we all stopped for dinner on the way home. Made a few fun comments here and there and she told us we were being bad (which was funny 'cause he's 52 and I'm 46) and we told her "Nope, we're making memories that only we have". That did bring a smile and we reassure her she is not a burden on us and how much we value her as a person and mother. I know it hurts her to be dependent on us, and she is aware that we are taking time away from work, family, etc to see to her needs... but I think it does make a difference that at least presently, we are doing so willfully, not out of duty. The problem I see with it, is our other brother never stops in to say hello, doesn't call or offer assistance of any sort and lives the next house down. We all live on the same road.. within sight of one another. She's feeling that hurt too. Any experience in dealing with family members who need a good swift kick in the pants?
Stay strong Becca... and hang in there with me. I'll be coming to WI in a couple of years... maybe we can cross paths.
Mary
