Sunday, 4 April 2010

school report day

I found Mum sitting at the desk in the Lounge, having just taken a call from a relative. She couldn't remember who it was that had just rung off. Her Key Worker told me that it was her Cousin.

Mum looked well, but was wheezing and very out of breath by the time we got to the armchairs. Ever since my Father died from Pneumonia, I've been alert to low lung function, so I checked with the Key Worker, who showed me records to prove that Mum had been seen by the Doctor. Apparently, all is well with her lungs, so it's a bit of a mystery why she's short of breath. Mum and I sat there smiling and holding hands, with nothing much to tell each other about our lives.

The Key Worker took the opportunity to sit with me and go through Mum's 'Life Plan', checking that I was still in agreement with various protocols in place around Mum. The only one that had changed was that the sensor under her mattress now alerts staff immediately once she rises during the night, so that they can come and help her in the bathroom. Originally, the alarm had only sounded if Mum didn't return to bed within 10 minutes, giving her time to see to herself. She is past being able to cope now, and the Key Worker was quite frank that Mum is now essentially incontinent.

It was surreal to be sitting next to a beaming Mum all the time that this was being discussed. The Mum I used to know would have angrily denied most of the stuff we were covering. Sometimes it makes me feel so guilty that I find it easier to like this version of Mum. She's much more easy-going and non-judgemental.

We discussed Mum's activities. Mum always claims that they don't do anything, but it turns out that she goes to every single event in "The Venue": sing-alongs, poetry readings, bingo, movies and dances. I was treated to some charming anecdotes about her participation. It seems that Mum is going through a bit of a jewellery-flaunting phase, and regularly returns to her room to add another rope of beads or a broach to add interest. She's still competing for the attention of any young men who come onto the household, with a view to securing a boyfriend.

The Key Worker asked me what I thought of the ever-changing decorations around the room. I told her that I felt reassured, as a relative, to know that the staff themselves were taking the trouble to make artwork for the walls - this month the walls are alive with Easter Eggs and Bunnies and there were some South Park-esque wall decorations which included real twigs and artificial birds. I told the Key Worker that seeing the effort that the Care Staff put into the decorations helps me believe that they are committed to more than their shifts. This went down well because, apparently, the Management are considering installing permanent artworks and banning the "tacky decorations". I was asked to complete a questionnaire on the issue and I was lavish with my praise of the team's efforts. I made the additional suggestion that maybe the residents themselves should be involved in making the decorations, but conceded that this would probably require more staff members to supervise the activity.

This is when I learned that the Care Team are also resisting the Management's decision to cut staffing to the level of 2 workers per household. As the Key Worker told me, this would mean that the residents would be unsupervised any time that both workers were needed to lift or bathe someone. The staff are currently documenting everything that they do in an effort to justify the presence of the third staff member. I am somewhat alarmed that the Management is trying to cut costs in this way whilst the fees I'm paying rise ever higher.

Mum's overall 'Well-being' report was very positive: she's relatively active and participative, sociable and friendly. She shows some awareness and can ask for help. I left the Home in the evening, feeling happier about the Care Staff, who seem more attentive than they were last year. I've seen a marked improvement over the past months, since the Gerry Robinson TV documentary. Simple changes, like sitting down to eat alongside the residents, can make a huge difference in normalising the experience for everyone.


Lily said...

Oh Greg, I know that uncomfortable feeling of liking the new, 'softer' mum better than the old. Its such a relief not to be criticised or blamed, with the old resentments gone, I can be genuinely affectionate with her. I just wish it hadn't taken 58 years to get to this point!

Greg said...

Thanks, Lily. I'm glad I'm not alone in having felt this way. It was only in writing this post that I finally put that into words, and it helps to have it out in the open. Criticism, blame and resentment - yes, these all used to play their part but have no place nowadays. I only wish, for her sake, that my Sister would visit and learn this for herself. It feels healthy to let the bad stuff go.

LSL said...

Hi Greg - I actually cried a bit when I read this one (a few days ago.) I guess just because it sounds really complicated and I feel a lot of compassion for you. I think I also feel some fear about being faced with these issues more and more, although in small ways. Anyway, it sounds like you're doing what you can and loving your mom in ways she can accept love. It's really something, at least from this angle.

Also - re: the Care Team, I was really upset thinking about staffing cuts, and I don't even know the details of the care they give! I will really hope it doesn't happen.

Greg said...

Hey there, LSL - I'm so sorry to have made you cry. You and I both know I've posted MUCH bleaker stories in the past. I didn't think this was a particularly bad one - more of a "business as usual, but some possible clouds on the horizon" sort of thing. I prefer the stories where I get some sort of epiphany to these "diary entry" ones.

Thanks for caring. I know you're going through an exhausting and stressful period right now, so I want to reassure you that there's nothing you need to get upset about over here. Mum is quite happy and entertained, and she and I are both fortunate that her particular dementia seems to be keeping her in a rather blissful state - no prozac involved, and believe me I have asked!

Good luck with your exams!

G x

citygirl said...

Hi Greg...I enjoyed reading this entry in some odd way. It reminded me of times with my mom and made me think "Greg is doing a great job" which made me think "Maybe I didn't do such a bad job myself" as your visit with your mom and meeting with the Key Worker sounded exactly like what I experienced.

My mom had wheezing at different points and they really couldn't pinpoint what the cause was. I was worried it was heart-related because she had triple by-pass surgery years & years earlier. I also worried that it was pneumonia because that is really dangerous for older people. After a battery of tests, the doctor prescribed a puffer for allergies/asthma and that seemed to help when she experienced wheezing.

I always hated discussing plans with the Key Worker, especially the resuscitate part ~ that made me bawl every time. I also didn't like hearing about the declines. But loved hearing the more positive parts like socialization and cooperation.

My mom would sit there beside me at the meetings too and be blissfully unaware which was a blessing. I also guiltily liked the more passive mom. The aggressive & angry mom was very hard to handle emotionally for both of us (me and her...she'd get so angry and worked up that I'm sure it wasn't good for her heart or emotional state). It was very hard for mom to be somewhat aware of her state. Can you imagine knowing that you're not "right"?! What torture.

Sounds like the staff at your mom's place really care. I hope the management doesn't cut too much as that will affect things for sure.

Greg said...

Hi cm2b :)

I'm glad that reading this made you recognise your own good job - it's funny how we can understand/support/counsel/forgive/congratulate others whilst remaining critical and unforgiving of our own selves. I always hoped that my blog would help others in their journey, so I'm really glad this reached you.

Thanks for sharing the similar experience with the wheezing. Although it remains unclear, it's helpful to know that someone else has seen this. I had forgotten at the time of writing, but a staff member did sit down alongside us at one point with an inhaler/puffer for Mum. As you say, they don't know what's causing it but this seems to help.

I am blessed that Mum doesn't really seem to know that anything is wrong - she acts as if everything is as it should be, and dismisses anyone showing more extreme signs of dementia as if they're just tiresome kids showing off to get attention.

Yes, it's reassuring to get the message that the staff care. I've had my doubts over the past couple of years, but I'm less concerned right now.

Y | O | Y said...

Glad to hear you Mum had a good report. If she's looking for a man, she must plan on staying around a while!

My Mom's place has had some cutbacks on staff; there have been quite a few deaths lately and a lack of new residents. I noticed this was mostly in the part-time kitchen staff where the activities folks now have to help out.

I had the same experience w/ my Mom regarding the defensiveness in front of someone doing an evaluation. Now it just goes in one ear and out the other!

Greg said...

Hi Y|O|Y

That's a good point about Mum's cougar activity - she's obviously feeling up to the chase. Having totally blanked her Husband from her memory, she's quite seriously out to catch some young man's eye. Since she's one of the more engaging residents, I'm sure the young men probably indulge her with conversation and flatter her a little, too. She's always happy and smiling, which is in contrast to a lot of them there, with their suspicions and complaints.

We've had some turn-over, too, which I've not recorded, feeling squeamish that one of their relatives might search blogger for a dementia blog and find their loved one described. Of the initial 10 residents, I know that one has died and another has been moved elsewhere after he became physically threatening. The whole ambience of the place changed incredibly for the better when he was moved on.

The cost-cutting thing is worrying. I felt very lucky to have found this place and was very pleased that it was quite a bit cheaper than a lot of the other Homes I was looking at, whilst FAR exceeding all of them for facilities and environment. But the fees have crept up and I'm worried that they will continue to rise. The company has been building similar "villages" in the region, which would seem to me to indicate that the business model works, so I'm troubled that any penny pinching that might affect Mum. One to watch, I guess. No sense worrying until something happens...

Anonymous said...

Hi Greg,

It is a bit alarming to know that there might be a possible staff cut, but very glad that the staff members are taking initiatives to let the management team to understand the situation. I hope that their (and your) voice will be heard and the management team will back off of that idea.

It's funny how reading your blog for a period of time now and that getting an update regarding on your Mom felt like getting an update on a distant relative. Thanks for letting us know our "auntie" is doing well and still have the girlish charm of finding a new man :D

Sorata said...

Hmm... for some reason it didn't show my name... that was Humphrey who typed that... :D

Greg said...

Hi Humph, I wondered if that was you anyway - the whimsical "Auntie" comment sounded like a Sorataism :D

I don't know if I see any hope in fighting cutbacks and price hikes - but then I've just got back from watching a Michael Moore documentary, so I'm probably at my most cynical about big business just now. But it is good to see the staff apparently concerned about the standard of care - that reassures me a little.