Each of us is unique both in him or herself and in reaction to the situations we all face at one time or another. I can only write from my own place in life and, understanding that each of our lives are different, I will find others to write guest articles about specific challenges they’ve been met with.
The first guest post by a caregiver is wonderfully written by Barbara Mcgeever-Grillo about her thoughts and experiences during the placement of her beloved husband, John.
In support of Barbara, I would ask that any comments be added to the published blog post itself rather than scattering them through the several support groups here on Facebook.
I’ve been reading your posts on the FB PPA Support Forum and it’s obvious that placing your husband, John, has been difficult and exhausting in every way.
How long has this struggle been going on?
I have been dealing with Primary Progressive Aphasia for close to 10 years. John was diagnosed in 2009 and I am sure he has had it since at least 2006.
I have been his main caregiver and advocate all that time. In the beginning it was easy to handle but as the diseased continued to progress it became much more difficult. He has been a practicing Architect since 1972 with his own business. I worked in the office alongside him so it has been hard watching his decline up close. Luckily our son is also an Architect and so he has taken over the firm where I still work.
How long since he has stopped work and necessitated more care?
His decline continued and about 3 years ago I placed him in a daycare setting at a school for traumatic brain injury. He started at 2 half days and as he became more comfortable he liked it very much. I increased the time he spent there until he was there 5 days a week from 9:30 till 3:00. That was a very big help but his decline continued, until I had to get an aide for the mornings to shower him and bring him to his program. An aide picked him up and stayed with him at the end of the day till I got home from work and I provided his care for the rest of the night.
That is an incredibly long difficult time to be ‘on duty.’ Were you at least able to rest and sleep?
Eventually he stopped sleeping all night and would walk out in the middle of the night so I did not sleep either. He was urinating in the kitchen garbage can during the night and then became incontinent so we moved to using incontinence underpants . Bowel accidents started and taking care of him was just getting beyond my abilities to handle.
How did you handle the wandering?
I had keyed dead bolts placed on all the doors so at least I could sleep knowing he wasn’t out walking in the neighborhood. Unfortunately he was becoming aggressive towards me almost on a daily basis and was experiencing ‘sundowning’ daily.
However much I didn’t want to place him, it was clear the time was approaching for a facility or full live in help. I just couldn’t manage him or my life any more.
I began looking at homes about 6 months ago. I had seen several places in Florida which I really liked but that would mean moving there full time and leaving the rest of my family. After looking on Long Island I finding something wrong with every place I saw. I eventually visited a place called the Bristal in Holtsville, NY which was new with facilities close to those I had visited in Florida.
He had an evaluation and they said he would be accepted but he would be the youngest person there and most of the other patients were female. I continued to wait but then there were aggressive actions at his school and with his aides and of course always with me.
People always say its not him it’s the disease but the diseased man is who I live with.
Three months had passed since his last evaluation and I had a week that was so horrible with him I went back to visit the Bristal again. They again said I should bring him in for another evaluation and it was good, so that day I put a deposit down.
How has it been going since he became a resident there?
He has been in 2 weeks today and my decision to place him did not come easy. He has since been put on on a very low dose of Xanax to help with the adjustment and he is not nearly as aggressive as his first few days there.
It is a daily struggle for me.
I just returned from a visit and when I first walk in I am always ready to take him home. It has been very hard to get used to him there and me being at home without him.
I don’t feel guilty just extremely sad and am having a hard time with the whole process. I see a therapist weekly who helps me navigate my decision. Some days I am mad at him for leaving me with this mess ( I know it’s not his fault it’s the disease) but all the decisions now rest on my shoulders and it is so very hard.
If he adjusts then it will be worth it.I cannot provide some of the activities they can provide so it probably is better for him.
I don’t know if it’s better for me. I need time to pass to see if this will work and time just drags.I have been having discussions with the way they are handling things and I am working with the staff to get it all straightened out. I have told them from the beginning he is not like anyone else they have there and they are beginning to see it.
He walks a lot and is up at night walking also. They are trying but this process will take time for him and me. I really don’t know if I will keep him there it depends on how they care for him and if, in the end, he will be happier there or at home with me.
When I left today l did not have to sneak out he kissed me goodbye and just walked away and he began working on a puzzle. He was peaceful but I was sad and I guess I always will be.
Now I should be able to see him on a regular basis and maybe that will make it easier.
This Saturday we will be married 50 years who would have ever thought this is how we would spend our anniversary him there and me at home, but that is what PPA has done to our lives.
I guess I just have to live with that but It’s oh so very hard.