This is a really long post, because again I am cutting and pasting from some correspondence I wrote. This time though it was a letter of complaint that I wrote to my Dad's home, but am yet to submit in any form. If anything I needed to vent, and if I am to submit it I think I will have to edit it, as I believe that when it is read in its present form, the sparks of anger almost bounce off the screen!
(Note: At my Dad's 'home' that don't call these complaints, they're called 'suggestions'... )
(Note: At my Dad's 'home' that don't call these complaints, they're called 'suggestions'... )
There I had to get it out, out with the bad, in with the good...Suggestion: Implementing a policy of ‘residents with pants wet through is unacceptable’.
Getting dementia is a terrible thing to go through, you lose your abilities, you feel stupid when once you were intelligent, you’re confused, scared and unable to make any sense out of what is happening around you. Losing control of one’s bowels and urinary system is a completely humiliating experience and it doesn’t matter how far one’s mind is gone, having to sit in wet pants, smell like urine or worse, being surrounded by other people is simply degrading and should be unacceptable.
Experience prompting suggestion:
On the night of the 16th, I visited my father in the ****** section. When I got there at 6pm there was no staff in sight and the place smelt disgusting. I saw that my father, sitting on a chair, was soaked through, his pants were all wet. I heard another man yelling that he needed help, and then also noticed that another resident who was wandering around also had wet pants. I tried to console my father who was yelling (and despite what many may think he generally has a logical reason for his yelling, and it was quite obvious to me on this night what was causing it, only an idiot wouldn’t realise) but he was obviously very upset and I shudder to think how long he had been sitting in those wet pants.
The man was once a highly respected person in the community and throughout this disease he has never once appeared to be oblivious to the degradation this illness brings to his life. He has had to suffer losing his abilities, & his self control. The societal misnomer that dementia sufferers are unaware of their situation is a load of rubbish (perhaps for some this is so, but not for my father). Has he not suffered enough, is it really acceptable that he should also be forced to bear the ultimate shame of sitting in one’s own feces and urine to the point that one stinks and the state one is in, is completely obvious to everyone and anyone?
On the night in question, two members of staff came into the area (main lounge area in the section) at different times, but when I asked if they were understaffed, or mentioned that my father and another had wet pants I was simply told that they were not working in this section of the home tonight. When I said that I had not seen any staff in this section I was told that they would be around somewhere.
As a man was still yelling that he needed help, I went to check on him and also planned to look for the missing staff members at the same time. Some might think that I was silly checking on a ‘crazy’ man who was yelling for help, because of course he is ‘crazy’ and we all know that such people often think they need help but really they are just confused. However as only a week earlier when I had walked into the ******* section quite bemused because the gate was wide open and again no staff were in sight, one of the ‘demented’ folk, (Rose) was begging for help, so I went to see what was wrong and the poor woman, was clutching onto a railing and couldn’t reach her walker…again, goodness knows how long she had been stuck there.
Anyway, I went and checked on the yelling man, found that he was in bed, and appeared to at least be physically safe (god knows I should have spent time consoling him, but I’m ashamed to say I become quite single minded and cruel when I have to choose between my father’s welfare and another’s) so I carried on to look for the missing staff. At the end of the hall in [resident]'s room I heard their voices drifting out. I assumed that they must be working changing [resident] or some such thing so thought, ‘Oh well, Dad will just have to wait his turn.’, and so I returned to the lounge area to try and distract Dad. Ten minutes later, with still no sign of any staff and myself being the only person available to answer the confused questions of the residents, I decided again to go see what the staff were doing. Still the voices were coming from [resident]'s room and the door was still shut.
Trying to decide what to do, not wanting to interrupt their work and not wanting to have [resident]’s privacy invaded, I stood out in the hall. It was then that I realized that it didn’t sound like the staff were doing anything much but chatting, and chatting unhappily about their workload possibly? I was not 100% sure that they were only chatting, and I am not 100% sure that I understood the gist of what I heard, but by that time I was getting pretty frustrated. One thing I and no doubt other family members do know however is that it is not necessarily tactically wise to stride around demanding good care for our loved ones. We know staff are busy, we know everyone needs to be cared for, we remember what hard work it is, we know that accidents will always happen, and we know that if we seem too pushy, we will just be remembered for being a pain in the butt and that is not going to help our loved one get any better care….so, I decided to return to the lounge, thinking the staff are already not happy, they are not going to be any happier hearing me tell them how to do their job, and surely they will come out eventually.
It took 25 minutes in total for me to finally see a staff member rostered to be working in that section that night, and I suspect it may have been even longer, had I not made my unhappiness plainly obvious to the other section staff earlier. When the staff finally did come out and I brought their attention to the state that my father and [other resident with wet pants] were in, I was told that ‘Yes well that’s quite usual’ and looked at like I was stupid for not realizing that and there was no apologetic tone at all.
As for [other resident with wet pants]’s wetness I was privy to the staff member’s loud complaints that he had already been changed 3 times already (I believe these staff start at 2 or 3pmish and it was 6.30 at the time). Perhaps I would have believed this comment, perhaps I should have, but I have heard it before when staff have been aware that I was not happy about such a situation, almost the exact same words every time and always in a dramatic stage whisper.
I am aware as I said earlier that accidents happen. I am aware that staff have a lot to do. I even might be willing to accept that sometimes it is unavoidable that residents will have to sit in wet pants for extended periods of time (although if this is the case I would hope that there is some lobbying in place for an increase in staff, if current levels can’t keep residents dry). What I can’t accept is the attitude that it is acceptable for my father (or others) to be placed in such a situation, that there is no apology for it (and I don’t mean just to me, but to him, he is still a person and staff need to remember how they would like to be treated and spoken to if it were them sitting on the other side of the care, and it could be them one day).
The horror stories you hear about pysch wards (and last i checked this is not a psych ward)…that was what I walked into the other night. These people are still humans who deserve respect and consideration.
This is not the first time I have been upset about such things (though I have noticed that for quite a while since Christmas wet pants had become quite a rare thing…but perhaps that was because I wasn’t visiting later in the evenings) so please don’t shrug this complaint off as a one time thing. If dementia has taught family members one thing is that you just got to get used to life not being perfect, and all too often we just accept the bad, because we are used to it, and because really there is not much choice. What would we do if you said, 'so what?', we can't do much except complain to the government, our loved ones have no other place to go, we wouldn't have put them in a home if we could still manage on our own.
So please, remember when reading this, that this is just the tip of the iceberg.
Last but not least, please understand that I submit these comments not as a threat, a family member in my situation has really has very little bargaining power, as society is very unsympathetic to the reality of what is truly needed for quality aged care, family members can’t afford to be choosy. Worse yet we are terrified of making life even harder for our loved ones by daring to make suggestions. Instead I submit this comment/suggestion as a plea for understanding, in the hopes that others might realize how much it rips your heart to pieces seeing your once very proud father in such humiliating circumstance. I submit these comments, in the hope that perhaps a new focus on striving for even better standards of care might be achieved.
Blah, blah, blah, blah, blah,