I worked this weekend on postcards for new requests, people who had sent gifts and those who sent postcards or letters. My health is such that while it was fun to do the postcards and stamping with Linda and Cheryl, it emphasized to me how what was an ‘addition’ to the weekend, now is my entire weekend. Plus, I was working with the new stamps we had received, which I spent my saved funds to buy at the local sale, but was too ill to go myself. So now, the joy of finding the perfect stamp, or getting that bargain is gone. Plus, though I search for and buy the postcards, I am too ill to do much of the matching, so that is gone also. And so 35 or 40 postcards, stamping and writing them are the entire energy that I have for a weekend.
It reminded me of the odd hypocrisy which seems to surround degenerative and terminal or life shortening illnesses: you have to work twice as hard to prove that you are ten times as weak in order to receive care and quality of life far below that of an average person. How a year or 18 months ago, the main focus of the weekend was going out somewhere, then in the evening I would do postcards with Linda and Cheryl, sometimes 30 or 40 or 50 or 80 postcards, and then do something Sunday morn, before spending a couple hours writing up the postcards. But I didn’t go outside, and it isn’t something ‘extra’, it is the whole energy of the weekend, after which I was passing out until I could get to bed and fall into exhausted unconsciousness. So what someone can write during a lunch break is now two days of work and two days of prep and recovery. And how is that rated in quality of life? It is higher in some ways than the weekend before which I slept the whole weekend, unable to be woken, but also lower.
And yet, it is at least a choice. Of a life with minimal choices and support, in this I get to be the giver of neat things. With life under care, it is the small things that tend to matter. This is small to you, but a deliberate choice and sacrifice for me.
Take for example palliative hospice. While it has taken four months of work, requests, doctor and hospital visits, due to a four day delay, I lost a respite, and have to wait an additional two months. So far, I have been told on the phone that the building is old and the RN’s in charge are inflexible, and perhaps this isn’t the respite for me (by the RN in ‘charge’). The video doesn’t show those who stay there, but only those who volunteer, who work there, and who have a loved one there during the last weeks. None of the quotes, even the ‘guestbook’ comments come from actual individuals who stay there. Why not?
Well, on the surface, it would seem, with the aim of improving the quality of life of the dying, that those who stay are the ‘boss’, and that the ways in which their condition exhibit would be accommodated. Also that the environment is set up for them. That would be the logical conclusion from the goal statement. But add in RN’s who see people come, die in three weeks (they don’t like you to move to hospice until the last three weeks), and go, over and over. It is not long enough to develop close bonds, nor do those coming have the energy usually to be seen as individuals, instead of just another ‘client’. So saying I don’t sweat got the comment that ‘perhaps this isn’t the place for you’ from one of the RN’s in charge (who don’t answer phones or work past 3:45 pm) and the sound sensitivity problem from the Fentanyl got the comment ‘well, this is a hospital, and you have to expect that.’ From the other RN.
While there is a full kitchen, for family members to use, and couch chairs for family members to sleep in, as well as a roof top garden, the majority of the 7 million in funds is for staff and so the ‘experience of death’ is as comforting as possible for the whole ‘family’. Those who have a family member who died there go for walks weekly, leading to a breakfast together, and they often volunteer (over 400). Yet, none of the able bodied individuals, or those who have done care giving there would chose to stay there themselves for the mandatory week (you must stay a week for respite, and that is all).
I am scheduled to go, yet when I asked, Linda looked somewhat horrified at the idea of staying there for a week of her vacation. She and ALL able bodied people said clearly 'NO' when asked if that is what they would want to do. Yet for me, this is something I am expected to do, and be glad. Yet, my Doctor wants it so that I can be observed in all hours and have my problems mapped and tested. Does staying in a hospital getting tests and observations sound like a vacation you would want? I find it difficult, sifting between the control words of ‘allowed to…’ or ‘permitted’, and knowing that this is a place where I may be the youngest person by 40+ years. Yet, despite that I am the bottom of the food chain, I still have to find the hundreds of dollars to stay here (since I can't stay what I can afford, but MUST stay seven days). Generally those 25 and under don’t die here, they have somewhere else, with X-box 360 and games raised by the Penny Arcade foundation. Here, there are people to take your life story. I would rather have the X-box, or Playstation 3 to be honest.
Those who are stable and disabled are seen more as individuals than those who have such limited energy as the dying. Caregivers, who group together, both to face off against the agencies and organizations, in order to be heard. Then there are the care agencies and government agencies. And above them the doctors and the specialists. But who is the advocate for me?
Who will take responsibility for my voice, to find out and ensure that I am heard as an individual with a disease, but a person, equally human an valuable as the specialist?
Not the able bodied, as Alzheimer’s often demonstrates with the immediate reaction of horror and ‘shoot me if I get like that’, when Alzheimer’s is only half of the numbers of those with dementia, and only one of the many conditions which cause dementia. Dementia is not fatal. I mention dementia because it is a disease aspect in which there are many clamoring voices, yet little to no representation. For Able Bodied individuals it is a ‘tragedy’, which describes their feelings of loss and care giving, not whether Aunt B or Uncle G was smiling or humming all the way to a death of old age. The disabled see it as a line of battle against those who would allow and expand Euthanasia, like the group Not Dead Yet – worried not about those with dementia, but that the implication of a lesser life could spread so that people would be killing those with their condition. The doctors and specialist give the diagnosis and statements and then fade away, while the care agencies and caregivers decide what is best, often label people as ‘difficult’ or ‘complex’ (like myself) in negative terms. And it is negative simply because humans as well as the diseases they get are diverse. I have repeatedly been told by Doctors, Specialist, those in charge of programs and 'gatekeepers' (those who decide who is 'worthy' of some aspect of care) that yes, they are discriminating against me becuase my disease is rare and thus 'complex'.
The primary caregiver support and lobby group in Victoria, following the example of other groups has createds a Caregiver Bill of Rights, but does not have a Caregiver Bill of Responsibilities, or a Minimum Standard of Care, or Desired Standard of Care (or even hands on training for doing caregiving). The ‘Bill of Rights’ is to advocate for the caregiver and to protect and defend the caregiver against all threats (which seem to be family members and loved ones who are cared for). “I have the right..to reject any attempt by my loved one (conscious or unconscious) to manipulate me through guilt, anger or depression”, “I have the right…to get angry, depressed and express other difficult feelings occasionally”, “I have the right to EXPECT and DEMAND that as new strides are made in finding resources to aid physically/mentally challenged and ill persons in our country, similar strides will be made toward aiding and supporting caregivers’.
So, the organization is not to assist caregivers advocate for those unable to, or for those with illness’ which require caregiving, but to collect power for caregivers, but without the rules of ethics that LPN’s and RN’s have, or the Oaths that Doctors have.
I am leery of any organization which sees illness and disability as ‘entitlement’ and ‘demands’ that they get the same or more. So if someone with ALS gets a speech pad, what does the caregiver get? The person cared for doesn’t have the right to get angry or depressed, lest it be seen as manipulation (how can burn-out or a deep depression classify as ‘manipulation’ instead of an illness?) while the person caring does have the right to get angry and ‘other difficult feelings’ Perhaps those feelings include ‘I want to kill them’, as Robert Latimer, Canadian, who suffocated Tracy, his 12 year old daughter with cerebral palsy while his other children where at church said that he gave her the care he would have wanted for himself.
Again, where IS the advocate and voice for those like myself who have severe or degenerating conditions? Most people who state that they would rather die than have dementia can’t name three different types of dementia, or realize that some dementia’s have the person cognitively lucid and focused for extended periods of time. And neither do many caregivers.
Who do I decide to trust when the workers I get from Beacon are determined by union seniority, the VIHA staff the same, and when things like ‘customer satisfaction’ sheets are a requirement only on paper, never seen in real life.
In the end, no one takes responsibility to help me have a voice, or even have the basics of care, much less a quality of life. If you are under 18 or over 65, there are laws (more for those under 18). If parents can’t give food, sleep, clothing, showers, water to a 14 year old, the child is taken away. I have careworkers come two to three times a day, I have two RN, a case manager, two schedulers’, a GP and now an emergency response palliative team PLUS Linda and yet last week I had 7 meals for the week, the week before I had 10, the week before I had 11. I have not had assistance for a shower, thus no shower for nine days so far, it was 8 days before that when I showered last (so 17 days and one shower so far). Medicine is missed regularly. So who, as I grow weaker, and weaker, knowing that my caregiver has the right to get angry but I don’t, not even unconsciously, in case they feel bad. That I do not have the ‘right’ to have the quality of life as if I was healthy, but according to the Caregiver Rights, the caregiver has the right to maintain and PROTECT that right.
Canada doesn’t have any rights or laws to protect those with disabilities, nor, as I have found again and again, will they enforce the BC human right that a disabled individual is free of discrimination.
Why does this matter? Because those are real people, so real, it is the person staring me in the face in that mirror. Yes, I am the person who, if my care giver believed what most do, would ‘kill me now’. I am the person which must not be suicidal or want to die, lest I let the ‘movement’ down. I must ensure that I do not diminish the quality of life of any of the able body people who love me, and accept that they have the right to get angry at me, yell, get depressed and deny care. I must accept that workers banned by all other of the 6,000 clients are allowed to come to me because they have worked for X amount of years already, and are paid whether they work or not. And I must go away to ensure the quality of life of a caregiver, to a facility which diminishes my own quality of life.
Or to put it simply: if a hospice that is presented as the highest standard can’t come up in quality of life to a basic three star motel, and an organization works to have a 'Bill of Rights' so a family member of someone with Downs' can yell and get angry at them, or a family member can terrify with frustration and careless words a relative with dementia (which indicates that will be them one day also), instead of teaching those same people caregiving tools and responsibility, is there not something wrong with the picture?
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