From bad to worse, once more
By M on Thursday 27 September 2007, 23:41 - Journal - Permalink
Things go from bad to worse with mum. Her recent urinary incontinence has proved to be a permanent development, and not some symptom of a transient urinary tract infection. Every family visit now includes the routine of checking mum's bed, changing the sheets and waterproof underlay, and trying to do so without upsetting her. Rachel and Regan have been taking the dirty sheets home to wash them.
I had great difficulty getting away from work today, and arrived at mum and dad's house about 6 pm. Dad had phoned me about 15 times during the day, wanting to know when I would arrive. In the end I switched my phone off, as work was not going well, and I just couldn't handle any more interruptions. I am days behind and face a looming deadline with very little of what I need to have ready. That is enough of a source of stress, other factors unconnected with mum and dad are exacerbating it. So I guess I did not arrive in the bounciest frame of mind. Dad made a big play about thinking I had disappeared off the face of the earth and was all ready to go to the mall (our usual recent venue for 'outings') right away. Mum was dressed, but seemed unsure of what she was doing or why. She gave the cats a glass of water soon after I arrived.
Before I fed the cats, before I looked at the mail, and before I decided whether mum was in any shape to go out this evening, I checked her bedroom. The bed was nicely made, but the sheets had, inevitably, been wet. Rachel has purchased two 'Kylies'. These are absorbent layers that are placed in the bed. It looked as if the one in place had been partially successful, though the urine stains covered nearly the whole bed. That was bad, but what was worse was that there were fecal stains all over the sheets, in mum's dressing gown, in several places on the carpet (two rather large) and also in other underwear I found around the room.
I'd called Rachel to find out how to clean Kylies, and she had suggested that I search around as much as I could, given mum's unpredictable attitudes to having someone touching things in her room. Mum had indeed popped in a couple of times but then apologetically backed out again, as if she had no right to interrupt me. Because of this, I was able to find a lot of things I really didn't want to find. I've mentioned the soiled underwear. There were also soiled sanitary towels, generally dirty clothing, mainly underwear and tights, and an awful lot of tissues and pieces of toilet paper, a banana skin, and so on.
I then set about scrubbing the carpet. Dad came to the door periodically to tell me that he thought I had gone home and asking for the umpteenth time, whether we were going to go to the mall.
Since I had already stuffed the washing machine (used as a hiding place for dirty linen) with the sheets and dressing gown, for Rachel to deal with on Saturday, I decided to take the Kylie and the other dirty clothes home with me. I was only once I got into the car, after taking mum and dad out for their cup of tea and cake, that the smell hit me. Although the things were in the boot, the odour still got through to me. Back home as I put the Kylie in water to soak, and prepared my washing machine for action, I almost gagged.
Curiously, the fact that things we so surprisingly worse than I had expected had a slightly uplifting effect. The monotony had been relieved, and I felt almost that sense of discovery that I had when Alzheimer's first started getting its claws into mum. This will certainly not last. The last three weeks have seen a serious fall in mum's abilities to cope, and I now think that her imminent move into care could not come a moment too soon.

Comments
Hi Mike, sorry to hear how things are going for you and your family. I'm glad that you feel more able to face up to your Mum going into a home - I'm sure it's the best thing for all of you. I don't know how financing such things work in Oz, over here it's complicated, frustrating, and they don't tell you what you are entitled to (and even if you know how discharge from hospital to a home is supposed to work, they don't actually follow the guidelines - rant rant!).
Mum hated the nursing home we found for her, though they did look after her very kindly and very well. She had vascular dementia rather than Altzheimers so far as we know, so her deterioration seemed to go in fits and starts. Basically I feel she lost her will to live once Dad died.
Really the last time I saw a glimmer of her true self was at Dad's funeral. I think that she somehow managed to hold things together as a final act of love to him. Yes, she was somewhat confused some of the time, but didn't act inappropriately, and spoke kindly to the few folks who came to the reception afterwards.
I never had a kind word from her after that, which still makes me feel sad. At least she apologised to John (husband) and Helen (daughter) for the awful things she said to them earlier on in her illness, so I'm grateful for that.
The end came both suddenly and slowly. Some detail is on my blog if you want to read about it.
Not quite sure why I'm burdening you with all of this. I guess it's partly fellow feeling. I have been very grateful to you and several other bloggers who have written about dementia - helped me to understand a little what was happening and the practicalities of dealing with it.
I send you my very best wishes, and hopes that life will get easier for you and your family.
Thank you for writing about such a difficult and painful subject.
Sorry to hear of this latest slide by your mother. We are currently playing medication roulette with Grandma.
However, here is a tip for washing that I wanted to give you. Don't use fabric softener when washing towels, "kylies" or pads. It reduces their absorbency. If you want a bit of softness, use about a quarter cup of vinegar in the rinse water.
Mike,
I found your blog today and have been reading through some of the early entries. I am retired and looking after my mother (in Sydney).
Funny there are some things that are very similar, and others quite different.
I don't know how I'd manage if I was still working! Keep strong!