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Palliative Bill of Rights
You Can!
Linda here - I'd like to reaffirm the fact that it doesn't matter if you are disabled or older, you can still lead an independent life, you can still get around, you can still look good and feel good and a lot of this depends on your attitude towards your condition and how you live.
Are you a problem solver? If not you need to begin. You shouldn't always have to look to others to bail you out when your life takes a change or throws you a curve. No one cares about you like you do...or should.
Here are a few problems with possible solutions to think about. You can solve problems if you put your mind to it.
If you've solved a problem, please let me know and I'll share it with everyone on this site.
Problem: I am disabled, my husband is dying of cancer, I don't know if I can live alone but I love our home and don't want to move.
Possible solutions: Is there a relative or a long-time friend who would like to share your home and expenses with you? Is you home big enough to have two or three friends live with you and share expenses? Remember The Golden Girls? Why not? Can you arrange for home care to come in once or twice a week to help with things your husband did like carry out garbage, change the bed and do a wash? Call CCAC and see what they say. Can you put a cleaning crew in place twice a month to do the dusting, floors and vacuuming? Would some of your friends give you two hour a week to help you do things like water and rearrange plants, furniture and do a little freshening up? Ask. You'll never know if you don't ask. Would a friend or two go shopping with you once or twice a month? And, for heaven's sake keep up you social contacts. If they are all geared to couples, start a card or book club at your home, invite frends over for dessert, have a potluck once month at your place or ask friends over to help you wed your garden and then BBQ lunch for them. When someone dies everyone always asks what they can do to help. Be prepared. Know what help you are going to need and ask for it. You'll never replace the man but you can carry on.
Problem: I am disabled and use an electric scooter all the time. My mother is in a wheelchair in long-term care. Her room is fairly small and I can't seem to do anything to help her. I get frustrated because I can't reach the plants on the window sill to water them, can't pick up stuff she's dropped on the floor, can't do up her buttons or wheel her downstairs. What can I do?
Possible Solutions: Your mother would rather see you then have you work around her room. Leave it. It doesn't matter. Or if someone else visits her as well, ask if you can combine your visits so they help you by watering plants, etc. and you get to sit and talk with mom. Ask staff if someone can roll her down to the lobby, the garden or tuck shop and pick her up in a hour or whatever is decided. Most have time. If not, arrange with the volunteers at the home to assist you. Tell them why you need help and see if they can comply. Most will.
Problem: My brother has terminal cancer. He has lived alone for eight years after a major stroke that took his ability to speak more thn six words. Now he is very sick from the cancerand needs 24/7 care. He can no longerl ive alne I am disabked, my sister has a family. How can we keep him in his home and care for him until he dies? Is it possible?
Possible solutions: This is such a tough problem because someone who has lived alone now needs someone 24/7. Begin with CCAC. See what they can offer. Talk to Hospice Niagara. They have friendly visitors who can come several hours a day. Call the Ontario March of Dimes. Ask friends and family if there is anyone who can commit to looking after him in his home until he passes. Share duties with friends and family. Build a circle around the person... a circle of family and friends doing jobs they can handle or giving time they can spare.
Longterm care businesses might be able to provide someone to live in. The cost is high but it is end stage and insurance might pay for it. Put yourself in the dying person's shoes: You've put money onto a RRIF and saved and now you need help as you die. It's your money. Why not spend it on your final days? In you search for live-in help - think twice about advertising in the newspaper. You could attract someone who is looking to steal drugs. If you do advertise publicly, make sure you do a police check on any individual who applies and ask for and check references or credentials.
Hotel Dieu Shaver will take people who are dying and need care as will Hospice Niagara. You talk to CCAC to put a loved one on the list for Hospice Niagara. The focus is, however, on keeping people in their homes as long as possible. There are solutions even if it's a tough problem but it takes a great deal of sleuthing and patience to find the answer to your particular problem. As a caregiver, you are responsible for another life. You have to do the very best you can and that means tapping into everything you can find.
Problem: What if there is no money to pay a considerable funeral bill because insurance hasn't come through? I remember my mother crying while standing at the front door talking to a funeral director who wanted his money. Funeral homes can ask for their money within 15 days - in some cases hardly enough time for those grieving to get their affairs in order. The insurance hadn't come through and she didn't have access to the bank accounts - dad did all the banking and bill paying - but the funeral director insisted. She was devastated by my father's sudden death. A demand for payment of his funeral was the last thing she needed. It is so very important to think and plan ahead.
Possible solution: A bit of advice is to have funds set aside in a joint bank account where the spouse can access enough to pay funeral expenses. Or, have a GIC or other investment vehicle that you can cash quickly but makes interest for you so cash is readily available. You can't use your spouse's credit card after he's gone. You can't use your spouse's bank account after he's gone unless it is a joint account. A RRIF in his name will be treated as if it has been sold upon his death. Life insurance usually comes through within two weeks but can take longer.
Palliative Bill of Rights
As a person facing the end of my life, I have the right to:
* Be treated as a living human being until I die.
* Live free of pain.
* Participate in the decisions that affect me and my quality of life.
* Have my decisions and choices respected and followed, even though they may be contrary to the wishes of others.
* Be treated with openness and honesty without deception or half-truths.
* Receive ongoing medical and nursing care even though the goals must be changed from cure to comfort.
* Express my feelings and emotions about my approaching death in my own way.
* Maintain a sense of hopefulness, however changing its focus might be.
* Be cared for by those who can maintain a sense of hopefulness, however changing its focus might be.
* Discuss and enlarge my spiritual and religious experiences, regardless of what they mean to others.
* Be cared for by compassionate, sensitive and knowledgeable people who will attempt to understand my needs and try to meet them.
* Receive support from and for my loved ones in learning how to accept my death.
* Die in peace and with dignity.
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