Or, is there a support group out there for the person taking care of the person taking care of someone who is ill?
What about the people affected by this caretaking? How do you adequately support your mate when a loved one of that mate is dying or ill?
Here's our situation and what is precipating these questions:
My husband's grandmother is old, past life expectancy old, and lives with non-treatable or inoperable lung cancer, and has lived with this condition, and the complications that go along with it, ever since I first married my husband almost eight years ago. I have never known this woman not to be sick, and for the most part she hasn't needed much caretaking except for the occassional visit and odd errand.
For a number of years in my marriage, I haven't gotten along with my husband's grandmother, and only recently came to an uneasy truce. So, resentment and jealously does figure into my situation, but problably all experiences with sick people is fraught with emotional complications.
On top of this, my husband has had to be my caretaker when I have been severely ill and hospitalized due to manic episodes brought on by my being bipolar. I feel guilt about putting this burden on my husband, and a always have a nagging feeling that I owe my husband one--and it hurts me to see him having to deal with another sick person, especially when I see first hand what he probably went through when I couldn't help him or be his support--because I was the one he was taking care of.
My husband isn't the sole caretaker of his grandmother--he has his uncle and cousin who probably take on most of the burden, but my husband grew up with his grandmother as his primary caretaker and saw his grandfather, her husband, die of Parkinson's when he lived with them at age 15. This experience brings back that helplessness he felt as a teenager.
Currently, his grandmother has had oxygen deprivation because of an infection that affected her already compromised lungs. She was released from the hospital, but the lack of oxygen has caused what they hope is temporary delusions and hallucinations. This is hard for me to hear because these were the symptoms my husband had to endure when I was ill. Someone has to stay with his grandmother until and if these mental aberrations pass. My husband is taking that shift right now.
My husband believes that his family is in denial about the severity of his grandmother's condition--there are no end of life plans except her having a DNR. I try to talk to my husband about his feelings, and he does open up, but I don't want to force him to dwell on it either. I know he feels stressed because he had to take off work for the past week due to his grandmother's issues. He isn't the type to take off work very often.
I know logically how to support him, I am aware of my own issues about this situation, but it doesn't make it is any easier. And no one ever talks about the people who have to support the people who support someone who is sick.
Anyone else out there with similar experiences?
UPDATE: The latest turn in this sad saga is that the grandmother now refuses to go on the oxygen tank she has been on for over ten years or take her medicine to help her breathing, which are are both needed to prevent the delusions/hallucinations. This forces someone to have to stay with her--my husband thinks she is doing it on purpose, at least unconsciously, so she will have company.
Thank you for the resources--I will check them out!


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Let's jointly write one!
CAREGIVER'S BILL OF RIGHTS
I have the right...
To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my relative.
To seek help from others even though my relatives may object. I recognize the limits of my own endurance and strength.
To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.
To get angry, be depressed, and express other difficult feelings occasionally.
To reject any attempts by my relative (either conscious or unconscious) to manipulate me through guilt, and or depression.
To receive consideration, affection, forgiveness, and acceptance for what I do from my loved one for as long as I offer these qualities in return.
To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.
To protect my individuality and my right to make a life for myself that will sustain me in the time when my relative no longer needs my full-time help.
To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting CareGivers.
© by Jo Horne, Author of CareGiving: Helping an Aging Loved One
However, I have tons of friends who came simply because relationships were too messy and they couldn't figure out why or they tended towards caretaking rather than caregiving.
It may be an option for your husband - my husband has gotten a ton out of it, too. We both really enjoy it.
We also went through a short caregiving stint with his father when he became terminal and my husband became my caretaker for over two years during serious physical handicaps as a result of PTSD. Help from a therapist was unmatchable. I wish you the absolute best in this tough situation. Rated with Love!