I will use my eyes and ears to make sure Paul can enjoy things as much as he can. I also know that I will never stop loving him, in fact I love him more each day if that is possible and I know that he will not stop loving me.
By Jocelyn Delaney
Alzheimer's Reading Room
We have had a great life. We have four great kids and 8 lovely grandchildren.
When I met Paul he was an up and coming Rugby player. He went on to play rugby at a reasonably high level and of course like most things in his life he put every thing into it, inevitably he suffered several concussions. I still wonder if this is the cause of his illness but they still tell me probably not.
In 2002, we went on a trip to Canada and the USA, this was to celebrate 40 years of marriage.
We had traveled before but this time it seemed a little bit different, Paul was a bit more hesitant about driving and doing things that normally he would not have given a second thought. I didn't think a lot about it at the time but looking back now I think that maybe that was the start of things.
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In 2004, we moved from Wellington to Otaki. Otaki is only a small place but I noticed we would go out somewhere and when coming home Paul would often go the wrong way and when I would say that we don't go this way he would say that he just wanted to see what was down there. He was pretty good at covering up. A couple of months later Paul had a knee replacement, he reacted badly to the anesthetic and his memory deteriorated even more.
In 2005, he had a Hip replacement, the nurses in the hospital commented on his memory or lack of it. However he made a good recovery and carried out all the exercises he was supposed to.
In 2006, I managed to convince Paul that we both needed to go to the doctor and that it would be cheaper if we went together. The doctor did the usual remember these 3 words, spell 'world' backwards, asked him to count backwards in 7's, draw a clock, all the usual things, he had all the blood tests, then we had a person from Elder Care come and visit us at home where she carried out the MMSE testing, plus a bit more.
The next thing was a visit to a Psycho-Geriatrician who did most of the tests again, he then sent Paul for a CT Scan which showed more than the normal amount of brain atrophy for his age. The diagnose 'probable Alzheimer's'.
Paul was prescribed Aricept. Paul took that for about 4 months but it made him very verbally aggressive – at that time I had not heard about ARR – so his medication was changed to Exelon patches as he could not tolerate the pills. After about another 4 to 6 months the Psycho-Geriatrican decided that they were not doing a lot for him so we decided to go medication free.
In 2007, Paul had another Hip replacement, this time it was a bit more difficult. He did not recover so well, even though he was pretty good at doing the exercises he still had a limp when he went for his 6 weekly check, his surgeon gave him exercises that he said would fix that. Even though Paul was reasonably good at doing the exercises it didn't seem to help and gradually his walk seemed to get worse.
Someone asked me did I think he had forgotten how to walk properly, I thought that was probably a reasonable question and maybe true. However over the next 2 or 3 years his mobility continued to worsen, which mean't our usual walks along the wharf and beach which we both enjoyed, got less and less frequent.
Paul also had a lot of muscle wastage in his hands and I remember asking our doctor about it as he was beginning to loose the use of his Index finger on his left hand. The doctor was a bit noncommittal and they seemed to think it was to do with Arthritis.
During this time his Alzheimer's was progressing and I was going through all the things that most carers go through. The constant repetition, losing things, spending money etc. I struggled to cope until I found Alzheimer's Reading Room.
I can't remember exactly when I found it, I know it was not long too long after it was started. - When did you start it Bob? I do know that it saved my life and my sanity – some might disagree with the sanity part. (Note: Jocelyn subscribed on April 6, 2009).
In 2011, Paul had three trips to hospital plus I'd had to call the Ambulance numerous times as he had fallen and I was unable to pick him up by myself. In our area we have the Wellington Free Ambulance, this is an amazing service, it is the only free ambulance in New Zealand, they rely on donations and special grants.
On Paul's last trip to the hospital I was told that it was no longer safe for Paul or myself to have Paul living at home, at this stage Paul could only walk a very short distance with two walking sticks, mostly we used a wheelchair. So on December 5, 2011 Paul went into Eldon where he has lived ever since.
When Paul went into Eldon he could still walk a little and had no trouble with his speech. Now he can no longer walk or stand and struggles to speak but still tries. Tina – the Charge Nurse, often said to me that he was a bit of a puzzle as he didn't follow the usual Alzheimer's/dementia pattern and I knew myself that while some things were the same as what I was reading in ARR others were different.
Last Monday, Paul was seen by a Geriatrician - he had actually had an appointment scheduled with her twice last year but each time he had ended up in hospital so the appointment was canceled. The Geriatrician has now diagnosed Motor Neurone Disease or Lou Gehrig's Disease along with the Alzheimer's/dementia, apparently it is not that common to get both but they are connected.
As devastating as this is it explains so much. I guess I was not surprised at the diagnosis, partly thanks to Bob for the links re Lou Gehrig's or ASL he had sent me, but I was still pretty devastated.
Paul is often on oxygen now and struggles to swallow food so a lot of it has to be moulied which has all the proper nutrients but doesn't look that appealing. They have told me that once he can no longer swallow then they will not tube feed him as it would only prolong his discomfort.
My hope/prayer at the moment is that he will get pneumonia or some other type of infection and we will not treat him for it (I hope I can stick to that decision) and that he will just slip quietly away. He has no quality of life and I often see fear and sadness in his eyes.
I wish I could swap places with him.
I was told that even if he had been diagnosed earlier it would have made no difference as there is no cure or treatment apart from the breathing and speech exercises which he is going to have but I am angry it wasn't picked up sooner.
Paul had three trips to hospital last year, couldn't they see the muscle wasting, even our Primary Care doctor didn't pick it up, although it was her that had scheduled the appointments that had to be canceled. I am angry with myself that I didn't push more when I sort of knew that there was probably more than met the eye.
I am very grateful to the doctor, nursing staff and the physiotherapist at Eldon who cared enough for Paul to look further into things and not decide that because he had dementia to just let things go.
At least I know that they care and are doing their best for him.
In the meantime we will live life one day at a time,
I will use my eyes and ears to make sure Paul can enjoy things as much as he can. I also know that I will never stop loving him, in fact I love him more each day if that is possible and I know that he will not stop loving me, I can tell that by the look on his face when I walk in each day.
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