My Journey With Frontal Lobe continued - 8th Feb 08
A page in the diary "My Journey With Frontotemporal Lobe Dementia"
Written by Lynne 8. Feb 2008 09:57 AM
I've just learnt a huge lesson - SAVE ENTRY !!! I have been spending the last hour typing in the last 12 months of my life, the phone rang and wham - I lost the lot. Well, "life's like a box of chocolates" . . .
Since my last entry my husband has been put into permanent residential care in a Nursing Home. He has been there since February last year. My life became extremely difficult at home. I couldn't go anywhere because I would keep loosing Paul, he would take off on me. I would have to hold his hand tight, he wouldn't go to bed until 1.00am and then would wake up at 3.00am wanting his dinner or breakfast. I learnt to have a glass of water and biscuits beside the bed to give him. Every morning around 5.00am I would feel his presence over me, he would be just sitting there leaning over me waiting for me to wake up mainly because he was too scared to go downstairs on his own. One morning I had instructed him to have a shower which he did and I went to check up on him and there he was just standing there. He'd forgotten what he was suppose to do so after that day I would have to shower him, dry him and get him dressed. I couldn't believe this was happening.
When my daughter came over with her family for dinner Paul would throw food off the plates that I was serving up because he didn't like carrots any more so everyone's plate was minus carrots. I learnt to serve Paul's dinner up first, sit him down to eat while I was dishing up everyone elses dinner. I was becoming very exhuausted and I might add very resentful. I didn't have a life. I couldn't talk to anyone on the phone because he would stand there and invade my personal space. I couldn't go to the toilet or have a shower without him standing there watching my every move. I felt like I was going crazy.
The last day in January last year Paul had to have an operation and that alone was a nightmare. I had to stay with him the night because he kept wanting to take the catheter out to go to the toilet. That was another problem, he felt he needed to go to the toilet nearly every half hour. I had organised respite for hime after his surgery and I told him that it was for rehabilitation. He was OK with that story but unfortunately the anesthetic took its' toll. It seemed to really affect Paul. I had heard that that quite often happens but he needed the operation. I didn't really have a choice.
The day Paul went to the Nursing Home for respite he was fine but I got a call the next morning to come and pick him up because he was high maintenance and they didn't have the staff to cope with him. By the way, they knew he suffered dementia and they knew he was high care. I was so upset. I didn't know what to do. I needed a break so badly. The first thing I did was ring Paul's specialist and he told me not to pick Paul up under any circumstances and they had a duty of care. I had signed Paul over to them for a certain period of time and he was their responsibility. If they couldn't look after him they would have to find somewhere that was more suitable. So that day we organised another assessment on him. They rang me up and asked me how on earth I had been looking after him all this time because they had assessed him as being high care and high security and advised me strongly to have Paul admitted on a permanent basis. I think the day we found out that Paul had Frontal Lobe Dementia and the day I had to decided to put him into permanent care were the worst days of my life. How could I do that to him? What type of person was I to allow this to happen? Don't we love to punish ourselves! I felt like the worst person in the world. How could I do this to someone I loved? It just wasn't fair.
I remember the day we took him to where he is now. My heart was breaking. I was crying so much but I didn't want Paul to see me crying so I went to the toilet a lot. My daughter told her father that I was upset and he wanted to see me so Tracie brought him into the ladies toilet (luckily there was no-one else in there) and I saw him looking at me and all I could say to him was "I'm so sorry" and he said to me "she'll be right on the night". My hearts been breaking ever since.
It was amazing how quickly he settled in and the staff were wonderful. Unfortunately, he's now in the phychiatric wing because of his aggressive behaviour and he needs more supervision.
I didn't like him being moved but I've learnt to accept this as part of the disease and the progression. I visit him nearly every day and unfortunately most days he doesn't know who I am. He walks straight past me. He doesn't talk any more but we all find it amazing that when one of the volunteers come and plays his guitar and sings Paul sings along as well and knew all the words. I noticed just recently that he needs a bit of prodding with the words sometimes but he has a beautiful voice and it often brings the female staff to tears to hear him because they have never heard his voice before.
I take him out occassionally down to our Indoor Play Centre and the staff that knew him from before make a big fuss over him and get him a coffee and cake. He'll giggle away. He loves getting out but once he gets agitated it's time to take him back.
I am getting on with my life a little bit more each day and I work part time in the family business. I've also started up a "Support Group" in the nursing home for the relatives of the residence. We meet once a month for a coffee and chat. The older women love it because a lot of the time they don't have much company and it's a social outlet for them.
I will have to end this little story for now. I hope you are all doing OK. It's amazing where we find the strength from. I know my Angels look after me, I don't know what I'd do without them. They're good to have on your side.
Bye for now. My thoughts are with you all.
Warm regards - Lynne