Hi All,
I can relate to Mary moving. My First time on this Caregiver Forum. We moved this past June from a 2 story house to a one floor house, due to my husband's condition. He has been recently diagnosed with PLS. Below is "my story" that I posted on the PLS/MND Support Group. One person answered and told me to go to the Caregivers Forum.
We, too, did not want to move because we loved our house and area, but it was getting more and more difficult for my husband due to his condition. It was no easy task to move at our age "Senior Citizens", and to do all the work that is involved. Of course, I had help from my son and daughter, but it is never ending. Especially, that you have to do all of the work yourself.
At the present time, I am getting used to the new area. We moved near our son, so that helps us a lot. He lost his job almost three years ago, so he has the time. But, once he gets a job it will be on me when the aide leaves for the day.
Mary, you will get used to the new house -- but, it takes time. At first, I hated it; kept saying why did I leave my beautiful home, and have to "start over". But, then I realized that we had to because of my husband's condition, which is not good and getting worst with time.
I have met a few of my neighbors. We live in a 55 and over community, and I'm getting used to the area. We moved about 1-1/2 hours away from our old house.
Again, I'm on this Caregiver Forum, because I want to relate to all of you out there who probably have or had the same problems I have, and would like some feedback.
My husband tries to be cheerful, but I believe he is getting depressed, because he has no interest in anything. Complains that he's not sleeping well during the night, and keeps me up a lot. So I'm constantly tired most of the day.
Anyway, wishing all of you people out there a Very Happy Thanksgiving and a joyful day.
Please respond with any suggestions or comments. Thanks
CA
Below is my story that I posted on PLS/MND Support Group:
This is my first time writing to anyone out there. My husband has been sick 4 years. We have been to numerous top doctors, and first they thought he had ALS, then it was two different things going on in the brain, then it was motor neuron disease, and now it is PLS. He had all the symtoms of each of every one of them. He cannot walk or talk at the present time. His motor skills are gone. He went from walking with a cane, to a walker to a wheelchair. He cannot shower, shave, dress himself or feed himself.
We have home aids to help. First it started with part time a few times a week, now it's an aid working from 8 am to 2 every day, and then she returns to put him to bed. We also have a person on a weekend 6 hours per day. All of this, of course, is paid by us.
This disease is ruining us financially, physically, and emotionally. Of course, when these aids are gone, I take over. So I am his caretaker for the last 4 years. I have a son who lives near, so he helps as often as he can.
At times I feel that I don't know how I do it all. If I don't do it, nothing gets done around the house or the errands do not get done, etc. I have to do food shopping, banking, post office, drug stores, errands, etc.
No time for my self anymore -- can't go to lunch or dinner, that is all in the past. Even shopping (which I loved to do) seems like a chore. I saw a therapist months ago, and he told me I am burned out, and put me on anxiety pills, which help somewhat.
My husband gets frustrated; because of his speech problem. He has a wordboard, and a speaking machine that we received from Medicare. When he was in rehab and physical therapy, the therapist suggested we get the speech machine.
He has had lots and lots of physical therapy and occupational therapy. But, nothing seems to help.
He also, at times, has swallowing problems, and the past few weeks is getting leg cramps during the night.
We have another appointment in early December with another ALS doctor that was recommeded to us by our Nurse Practitioner.
At times, I just feel overwhelmed with everything. It's no picnic for my husband or me. I remember the good times we had when he was well, and now it's over. And, how handsome he looked when he was dressed. Now, he just sits in his chair, mumbles and hardly watches TV or reads the newspaper. That was one of his passions, reading the newspaper, and the Sports Section the first thing in the morning.
I wouldn't wish this disease on my worst enemy. It is a terrible disease, and I wish that the doctors or research would find a cure or some kind of clinical trials that would help.
Please send some feedback or suggestions
