Chapter 476 - Clarity of Mind
A few days ago at the dementia carers' group I attend I asked too many questions about all the care groups I am now aware of, and when I asked whether I could hand out some brochures for the care group in Hot Air City (part of its bailiwick is our town) that has funded me with a respite budget I was told that if I really wished to, I could. Confused, I pushed the brochures back into my bag.
Recently a friend suggested I contact a lady, at another group, after he had spoken to her about my situation. It seems she is involved with schizophrenia problems, yet spoke to me for at least an hour on the phone, an entirely unsatisfactory way to discuss carer support problems because my issues seemed to be asked about in reverse order. She seemed surprised toward the end of our conversation that we had a Level 4 Support Package. She mentioned another care organisation that she indicated had set up business in a recently vacated bank building. I cased the place, did not enter, did not see an appropriate title on the door. So I researched the organisation on line and found that it had been established in 2007 (I think), had a management structure in place of individuals in a number of states and the founder was contactable via mobile phone and a PO Box number in a suburb of Batman City down south. There seemed to be no branch offices. On researching the founder I learned he had failed to be elected in several state elections, having run on a ticket that sounded very much like the aspirations of the care organisation he has established; I could but wonder whether the care organisation was a way of establishing a political base.
Then today we attended a Xmas lunch of our local PD Support Group. The CEO of the state organisation attended and said a few "rally round the flag boys" words, reflecting the achievements attained by the restructured management. Some weeks ago I drafted but did not send an email commenting on the organisation sending fund raising requests to PD sufferers to support the cause financially. Another arrived in the post a few days ago. Fatigued and hot (the air conditioning in the room was malfunctioning) I asked the lady why the organisation did not better direct their fund raising junk mail. The main point of her reply was that I should bin it if I didn't like it. Later at home I sent an email to the organisation, CC'd our local organiser, stating my comments more clearly. Read it below:
%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%
I am the one who at today's PD Group Xmas lunch made negative comments about PXXX's fund raising blurb that was included with the Annual Report, as well as in a separate mailing a few days ago.
In recent years I have found the tone of fund raising newsletters and pamphlets more and more aggressive and guilt producing. Parkinsons XXX is no exception. Perhaps the same marketing agencies prepare the copy. So easy these days to make newsletters more personalised by liberally scattering the recipient's name throughout the brochure in computer generated handwritten comments. More difficult for an organisation to tailor the message for the recipient's situation, such as PD inflicted, carer, family member, or the general masses.
My wife Xxx has borne the continuing devastation of PD for 26 years of which the last few have been tolerated from a wheel chair. We have supported various organisations, including various PD ones, over the years. Could we have given more support to any of them? Yes, I'm sure we could have.
Your suggestion that I can always throw such unsolicited fund raising brochures in the bin is quite correct; I usually do. But surely that misses the point?
Did you hear several quiet comments made at the table after I spoke; saying "I agree with you" ? At least three, a sizeable proportion in such a small gathering. Unsolicited market research?
Now as I scribble some credit card numbers in Xxx's name on the donation slip at the bottom of the brochure I am bothered that I must expose my credit card details once again. Making payments by bank transfer or by PayPal is so much more convenient, and safer, for me.
I am thankful for the pre-paid reply envelope, but it's hardly 21st century technology.
%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%
I just noticed a typo in the above, now corrected, but not in the sent email. Woe is me!
Anyway, the acts of offending people this week have brought my mind out from beneath a fog. I will forget about organising an appointment with a shrink person; they can only comment about her thoughts and behaviour; they can't give her treatment to "improve" her. I need to extend the scope of my care to cope with her idiosyncrasies rather than condemn them; to tolerate her activities unless they become harmful. What the heck if she pulls labels, ties and stuff off her clothes while seated on the toilet (we can buy more clothes rather than patch the holes); what the heck when she continues to re-arrange the contents of the fridge and cupboards; what the heck when she attempts to roll up half full (not half empty!) tubes of gel or ointment and hold the rolls in place with rubber bands (have you noticed or care that modern plastic tubes refuse to remain rolled up; unlike soft metal tubes of yesteryear); what the heck if she ...................
I hope my carefree feeling extends for at least a few days, perhaps into the new year, without needing to upset more people.
Recently a friend suggested I contact a lady, at another group, after he had spoken to her about my situation. It seems she is involved with schizophrenia problems, yet spoke to me for at least an hour on the phone, an entirely unsatisfactory way to discuss carer support problems because my issues seemed to be asked about in reverse order. She seemed surprised toward the end of our conversation that we had a Level 4 Support Package. She mentioned another care organisation that she indicated had set up business in a recently vacated bank building. I cased the place, did not enter, did not see an appropriate title on the door. So I researched the organisation on line and found that it had been established in 2007 (I think), had a management structure in place of individuals in a number of states and the founder was contactable via mobile phone and a PO Box number in a suburb of Batman City down south. There seemed to be no branch offices. On researching the founder I learned he had failed to be elected in several state elections, having run on a ticket that sounded very much like the aspirations of the care organisation he has established; I could but wonder whether the care organisation was a way of establishing a political base.
Then today we attended a Xmas lunch of our local PD Support Group. The CEO of the state organisation attended and said a few "rally round the flag boys" words, reflecting the achievements attained by the restructured management. Some weeks ago I drafted but did not send an email commenting on the organisation sending fund raising requests to PD sufferers to support the cause financially. Another arrived in the post a few days ago. Fatigued and hot (the air conditioning in the room was malfunctioning) I asked the lady why the organisation did not better direct their fund raising junk mail. The main point of her reply was that I should bin it if I didn't like it. Later at home I sent an email to the organisation, CC'd our local organiser, stating my comments more clearly. Read it below:
%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%
I am the one who at today's PD Group Xmas lunch made negative comments about PXXX's fund raising blurb that was included with the Annual Report, as well as in a separate mailing a few days ago.
In recent years I have found the tone of fund raising newsletters and pamphlets more and more aggressive and guilt producing. Parkinsons XXX is no exception. Perhaps the same marketing agencies prepare the copy. So easy these days to make newsletters more personalised by liberally scattering the recipient's name throughout the brochure in computer generated handwritten comments. More difficult for an organisation to tailor the message for the recipient's situation, such as PD inflicted, carer, family member, or the general masses.
My wife Xxx has borne the continuing devastation of PD for 26 years of which the last few have been tolerated from a wheel chair. We have supported various organisations, including various PD ones, over the years. Could we have given more support to any of them? Yes, I'm sure we could have.
Your suggestion that I can always throw such unsolicited fund raising brochures in the bin is quite correct; I usually do. But surely that misses the point?
Did you hear several quiet comments made at the table after I spoke; saying "I agree with you" ? At least three, a sizeable proportion in such a small gathering. Unsolicited market research?
Now as I scribble some credit card numbers in Xxx's name on the donation slip at the bottom of the brochure I am bothered that I must expose my credit card details once again. Making payments by bank transfer or by PayPal is so much more convenient, and safer, for me.
I am thankful for the pre-paid reply envelope, but it's hardly 21st century technology.
%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%
I just noticed a typo in the above, now corrected, but not in the sent email. Woe is me!
Anyway, the acts of offending people this week have brought my mind out from beneath a fog. I will forget about organising an appointment with a shrink person; they can only comment about her thoughts and behaviour; they can't give her treatment to "improve" her. I need to extend the scope of my care to cope with her idiosyncrasies rather than condemn them; to tolerate her activities unless they become harmful. What the heck if she pulls labels, ties and stuff off her clothes while seated on the toilet (we can buy more clothes rather than patch the holes); what the heck when she continues to re-arrange the contents of the fridge and cupboards; what the heck when she attempts to roll up half full (not half empty!) tubes of gel or ointment and hold the rolls in place with rubber bands (have you noticed or care that modern plastic tubes refuse to remain rolled up; unlike soft metal tubes of yesteryear); what the heck if she ...................
I hope my carefree feeling extends for at least a few days, perhaps into the new year, without needing to upset more people.
posted by Kilpike | 9:05 pm
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