Monday, October 03, 2011

Postcards and Power structures

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 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?


SharonMV said...

Yes, yes! there is plenty wrong with that picture! If the outside care provided by agencies was better, if they had consequences to face, better training. etc, then the family or other primary care-givers would not need as much support. They would be better able to deal with the grief & sadness their family member's illness causes them. They would suffer less burnout. Improving quality of life for the sick/disabled person
should be an important goal. Just meeting the bare necessities of care with some compassion - medicine, food, help with washing, dressing,etc would be a big improvement. We know from you how terribly lacking in care, compassion & responsibility the system in BC is. Where is the outcry for justice here? These agencies should be investigated, the system changed. Where are the advocates for this? Who has the right to be angry with this system, those who run it, the government which allows it? Every citizen has that right. Where are the demonstrations? Which organizations (for the disabled, caretakers,etc) are taking up this cause? Journalists should be investigating & writing about it. Anyone, at any age could develop a serious chronic illness, or have a spouse or loved one who becomes ill.

You,Beth, should be cared for. You should have the most say in how you are cared for. You have the right to be angry, depressed. Express it here, if you want to. We listen. I am so sorry that you have to deal with such a lack of compassion, decency, skill,& reasonable people. I am glad of your voice speaking up, your writing illuminating this issue.

The cards are so pretty. I'm happy to see them. I know how sad & frustrating it is to spend more time & energy to accomplish less. You don't get to enjoy it as much and others often don't realize how special each card is, what a gift of time, work, energy & caring it is.

Love, Sharon

Selene said...

I don't always know what to say, but I am so glad you write and share this with all of us. And I am so sorry that this is where you find yourself. I am thinking of you.

Baba Yaga said...

Excellently and passionately put.

Short on words, sorry no more.

Kate J said...

Something very wrong. You're certainly right there, and I have to say that although there are a LOT Of problems with care for people with disabilities, or with terminal illness here in UK, I think on balance it's probably better than what you describe. Varies, a lot, though, from one facility to another.

Although I do think that too often the needs of carers, 'loved ones' etc are put first and the ill or disabled person is often not listened to.

So, I do hope it turns out you're wrong about how they're going to treat you there, and that the staff are caring and supportive, put your needs first, and are able to provide some real relief. I hope that, too, for everyone who has to spend time in such a hospice or 'respite' facility.

Glad to hear you were able to do some postcards - they bring such joy to those of us who receive them! I sent you a couple in the last week or so... I do hope they arrive OK and bring you some pleasure, and let you know you have friends who care about you.
Love & peace

Tina Russell said...

You’re right, it’s terrible how stories of hardship in caregiving tend to focus on the hardship of the caregiver, and stories of abuse by caregivers assume this is only about children and the elderly. I remember my friend who was staying at a group home for a while where they wouldn’t even let her invite me back into her room, only family, I was only allowed in the communal areas where we’d get stared at for being two 20-something girls among someplace that was almost entirely 50+. (They also had her on a reduced-calorie diet, because it was “standard,” not taking into account how dangerously skinny she already was, or questioning why something like that should be standard.) I know you’ve been things like this plus much, much more, I’m just reminded of how they didn’t see my friend as a person, as someone who might want close friends, who might want to have sex, etc. She might need assisted living all her life and they treat her like a prisoner—no, it would be cruel even for a prisoner. She keeps going to new places, then, and it’s just been horror story after horror story.

(sigh) I’m not the patient, though, I’m not even a caregiver, I’m just a friend... so I can’t really speak for her... I’m just sad. I hope quality of life will one day be the primary concern regarding people who need care, rather than this attitude of “maybe you should’ve thought about that BEFORE you got a life-threatening illness” or whatever it is.

Elizabeth McClung said...

Kate: Don't worry, soon you will be of a much, much lower social status and not listened to, as each year advances you closer, and also increases the chances of accident or disease. In fact, the first signs of dementia from one of the various causes might already be present, and then most of your friends and those you currently are treated as only a slightly less than equal to, will view you as someone who should kill themselves, if they only had the foresight (take the self test from a reputable dementia society now). I did spend 3-4 hours of my weekend working just on your postcard, and Linda and Cheryl spent about 2 hours each. I am so glad you spent five hours on what you are sending, I look forward to it!

Sharon: I think the question is, why are the citizens, the general public who choose to put a whole section of people out of their mind not held responsible. The basis of a republic/democracy is not just the enlightened citizen but the responsible one. We are all responsible. I have said before that I did not know how privilaged I was, and am sorry for that - yet many aren't like me, 'too late wise' but too late caring about each other. As those with disabilties should run the disability organizations, not 'be run' by AB, without consult. In the same way, it is Terry Fox that made the cancer run which all can participate as equals, and his mother who decided to cash in on his name (along with government) in giving an award to only the most elite example of able bodied athletics at the Olympics - rewarding without learning, the very reason why Terry Fox, who was palliative, could see farther, and someone like him should have been consulted.

Selene: I find myself where tens of thousands also find themselves, just in this province, where hundreds of thousands find themselves in North America. I hope you find a voice soon, because you have the energy to keep speaking. I don't.

Baba Yaga: Without hope, there is no future - and unless people act, this is the where they will find themselves: without hope.

Tina: yes, this is the same, the 'standard' is applied and those who operate, assist, and work there don't understand accomodation, and the system was built by those who can't concieve of individual accomodation - it isn't a hassle, any more than having different names is a hassle (that is accomodation on the most basic level).

Noisyworld said...

So much is wrong with the picture I haven't a clue where to start :(
I wish the basic support you need was there (let alone the added extra like help to leave the house!), I wish the basic human rights you deserve were taken into account, I wish everything wasn't so difficult, I wish, I wish, I wish...

Neil said...

Well, dear, I don't think I could disagree with calling you "complicated." Or your disease and its progression. But that doesn't mean you stop being a person.

Yes, there's a challenge in meeting your needs in a respite setting; but that's what they're bloody well paid for - to FIND you some respite and deal with your treatment.

Maybe you could define the medicate system as "complicated" and insist that it doesn't have the right to order you about. You, however, should have the right to receive proper care, and to be angry at not getting that care.

It's so frustrating, sitting on the sidelines watching you being so unfairly treated. I'm sure it's more frustrating being the one ignored, though.

I hope you can get some decent care, sleep, hygiene assistance, and food this week. And less pain and frustration.

Love and zen hugs,

wendryn said...

There is a lot wrong with this picture, and it is hard to fight because people don't see the people who need to be fought for. They see the people they can understand and empathize with, not the people who make them afraid because they remind them of death and its inevitability.

I'm glad you did postcards - they look beautiful. I sent two today - would have sent them Monday but the new stamps had not yet arrived.

Lorna, Bob and Liam said...

Beth, pardon my instrumental use of the comments section, but...

I need to get in touch with Neil - your friend from Saskatchewan who regularly posts here.

Neil, we met through the Pibgorn group... do you still have my email addy? If so, could you email me?

Back to your regularly scheduled blog...
Lorna of Lorna, Bob and Liam

SharonMV said...

Dear Beth,
Yes, I agree - I said that the citizens had the right, but I was implying that they were not doing anything. It's difficult to get people to think about & help sick or disabled people. Add in the issue of decent home care, well most don't want to even think about it.

I don't think I have any access to home care. Skilled nursing is probably covered by insurance. I'm pretty sure there's no other kind of care for me unless we can pay for it.

Elizabeth McClung said...

Apologies for any previous bluntness. Right now, I cannot remember any moment but now, due to a recent series of seizures and mini strokes.

I want to be cheerful and dispassionate, but I fail. I fail at most things most times. Teetering between loss of hope and Dispair tones down the funny. I try, I refer to myself post seizure as 'shaken, not stirred', and as 'product of another botched science experiment'.

I am truely sorry if I hurt your feelings for speaking in a rough and unkind manner.

Elizabeth McClung said...

Sharon: I don't know how to get the medical kind of home care but someone who can assist in brain storming recipes, making up shopping lists from the fridge, doing cutting up of food for meal prep can all assist in improving quality of life (for example, cutting up the veg for a stir fry, will keep for 2 days in the fridge, so is ready when you are, and only minutes to cook). Doing laundry and dishes, even moving small objects from one place to another, like a book to read, or which has been read, if too weak to carry - I know that makes a difference in my life. I think a disability center for california could advise you on the options available to you. Also, you should be able to qualify for disability, which helps in many ways, from blue badge for the car to free visits to national parks.

Noisyworld: I am seeing that the problems I face will not be sorted in my lifetime. But with the rate of cancer, of MS and other conditions, it isn't an abstract to want this sorted and cleaned up, it is a needful reality. If I was single, I simply don't know how I would have been able to keep ahead of the disease to do all the paperwork involved, besides the rest.

Neil: I have found that the 'not my inch' comes in strong in these sorts of situations, where specialist pass the buck, becuase it is not their inch, and so do VIHA workers, who then, at 4 or 4:30 clock out. To stay and solve a problem takes a unique individual, to say, 'not my inch' and pass the file or person on seems the model that is taught, or shown in example from others. I hear from someone at LPN school that ALL the teachers there are RN's from this area that can't stand the slew of bad nurses. The problem is now we have 20 less or 30 less good RN's working. I have RN workers who come as regular care workers (can't get them as a weekly sadly) becuase they would rather do this than work in Victoria's system full of RN's and other staff who don't do the job. As for our hospital, the on-call experts I know, 4 are the old males who said 'what is wrong with medicine today is that women are allowed to be doctors', The heart specialist who took 18 months to get back to a child who had a leaking heart, and told me authoritatively that he WAS the expert, but when asked, had NEVER seen a heart case involving autonomic failure (considering POTS, PAF, and MSA - those are not that rare a condition - so hence, not that wide a practice - but the 'heart expert' for Jubilee, the Victoria Hospital) and the neurologist is one of the 4 left out of 21 from 5 years ago, this one dropped clients due to irritation that a specialist she shared an office with made an observation which she felt 'neurological' and thus stopped speaking to him until he dropped the patient - so a patient gets no care in order for her to be 'right' - which seems against the oath and shows deep insecurity.

I don't think the problem in Canadian medicine is that we don't have the 'best' but that we have terrible work environments (when alberta cuts all pay by 10% to make a budget, that doesn't make people happy, then BC cuts the techs salaries by 12%), and a lack of motivation to continue training - most doctors I talked to haven't read a journal article in the last 10 years, much less have been to a conference. An RN who was supposed to be newly trained used a term from the 60's to refer to a disease. Which she probably got from hearing doctors use it. When GP know 2 seizure disorders and 1 dementia, and the 'specialist' giving the dementia test doesn't know how to take a 'mean reading' or know the different types either, we are medically what the world criticizes the USA regarding geography: embarressingly undereducated compared to French GP's who have a 24 hour hotline service to come to your door. Our MRI machine comes from 30 years ago and has a 9 month wait. That's Victoria.

Elizabeth McClung said...

Wendryn: Yes, I also think the devolution of a family structure which includes caregiving experiences growing up means caregivers see themselves as seperate from society and family and thus need to defend themselves, too bad they steal the right from those they are caring for instead of realizing that advocating for both individuals rights is a better way.

SharonMV said...

Hi Beth,
I do have the blue parking placard, have had it for years. I can't drive anymore, but we still use it when Dennis takes me to my appointments.I didn't think of the CIL, and I used to live down the street from the center in Berkeley.
I didn't qualify for Social Security when I became too disabled to work(1992) i had been in grad school & most of the jobs I had for that period (5-6 years) were part of my fellowships & financial aid).So according to the rules, I hadn't worked enough quarters in the 10 years prior to my disability. So I also don't qualify for Medical benefits through SS. I can't get SSI which covers low-income & other people because I'm married & my husband has income. Though, I should look into that again since our income has gone down so much, though I fear the small retirement account we have would disqualify us. The insurance companies I've had over the years did not cover any kind of non-medical aid. I think that kind of help is expected to come from the "private sector" here in the USA. We used to hire a visiting nurse to come by & check on me, do a little house work & meal prep when Dennis had to go out of town, but it's more than we can afford now. I really should check with private agencies.

So sorry that you had more seizures. Your bluntness is often part of your charm. Even without memory of offense, you still apologize in case you hurt anyone's feelings. Having you for a friend these past three & a half years has helped me so much.


Kate J said...

Beth, I'm sorry if you thought I was patronising you or something... I was only trying to be supportive, agreeing with SharonMV's comment and making a couple of comparisons with health care here in UK. Based on the experiences of people close to me and my own observation.

And yes, obviously I don't spend hours on writing you a postcard - just a few minutes. I never claimed otherwise, I just thought you'd like to receive postcards, and if you don't want them I'll stop sending them.

I wish you well.

JaneB said...

Yes, what you describe is wrong, and unfair, and to be battled. Thank you that you take the time to write these posts, to share the perspective and prod those of us who maybe aren't as thoughtful as we might be into thinking about these very important issues whilst we still have the strength to do something about them.

Hope you get to eat more this week!

GirlWithTheCane said...

Beth...I wish that there was more I could do to help right now. I'm thinking of you.

- Sarah

Maggie said...

Beth-Sparky and I think of you often and wish that we were still on your side of the world to help out. I wish too, that there was something we could do to fix the system, make things right for you, Linda and Cheryl. We send our love, thoughts and well, I guess what ever we can to you all.