Melissa Miles McCarter

aka lissahoop

Melissa Miles McCarter

Melissa Miles McCarter
Location
Ironton, Missouri, USA
Birthday
February 27
Title
Smiler
Company
Fat Daddy's Farm
Bio
I live in Ironton, MO and currently am working on my doctorate in rhetoric and composition. I am married, have two cats, and two English bulldogs. Recently I wrote a book chronicling some of my experiences being bipolar, "Insanity: A Love Story." I try to blog about my own experiences with the condition, my opinions about popular culture, and, of course, my two bulldogs. My writing is thoughtful, probing and somewhat intellectual. I tend to be serious, but I do have a silly side (as seen in my musings about my bulldogs, Boss Hog and Daisy). I like to read posts that look at an issue from an interesting angle and try to sift through all the noise that exists in our media-saturated world. I am interested in how our personal lives and experiences interact with others--and I have no tolerance for meaness or spitefulness, but I am "turned on" by generousity and kindness. I look forward to writing posts that are challenging and strive to be insightful...I am hopeful about opensalon providing an avenue for smart writing.

Melissa Miles McCarter's Links

Lissa Links
NOVEMBER 4, 2009 8:37PM

Being the caretaker for the caretaker

Rate: 10 Flag

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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I'm a caretaker, and I could use a caretaker. It's a common problem. You raise an interesting point, and point to an interesting need.
Who takes care of the caretaker... that's a good question. I take care of my father. He is blind (macular degeneration) and has a tumor in his stomach, a pulmonary embolism, paranoid dementia, hallucinations and episodes of rage and depression. He wanders all night, calling out for supper or coffee or attention at 3-4 AM. I juggle caring for him and running my business (I work from home) and it's exhausting. I don't have a caregiver, but I can say that support doesn't always have to be the talking kind. Sometimes, just a long bear hug and a backrub would be really nice. Give your hubby a hug whenever you can. :)
the ranting boomer and kathy--if you don't have a caregiver, if you don't have a caretaker, where do you get your support from?
Sometimes I write, sometimes I take a bubble bath, sometimes I buy myself flowers -- mostly I cry a lot. Not from sadness, just from sheer exhaustion. I'm the kind of person that never used to cry. No emotional tears, no waterworks - that's just never been me. I'm the most stoic person I know. But now? Cripes I cry almost every day. Just exhaustion. One I find a respite program that works for Dad, time off will be my support.
At age 56, both of my parents and both of my wife's parents have passed away, so I've never dealt with this issue. I have plenty of friends that have, and it's hard on all of them. I just hope that when I'm old and sick I don't become a burden. (Rated)
Melissa, I don't get a lot of support from family, but I do have an extended network of friends both online and off who are supportive. Writing is therapeutic. I take my moments where I can, my joy where I can, my quiet where I can. I've been essentially 'on' 24/7 for over five years now, without a break.
are there public/outside resources for your loved ones to give you time off--like day programs, or assisted living, or home health aides, or something more I haven't heard of--or do you choose to not use those programs? I wonder because my husband is trying to figure out their options, because 24 hour monitoring just isn't going to work without outside family help. I know there are support groups in the real world (and online) for caregiver. And i have heard of burn out for the caregiver. I heard a great program on the topic a while back on NPR. for the people who have become caregivers, what put you in that situation, did you choose it or were you the only person around (or is it ever something you choose?)
Melissa, my husband went into the hospital for surgery five years ago and came out eight months later. I didn't get a lot of family support. We don't qualify for home health care. I have gone to caregiver support groups and retreats, which has helped. No one figured he'd do well enough to go home, and thought he'd go into a nursing home or assisted living; if I had a home health aide or visiting nurse I'd have to pay out of pocket (have had to do so twice, $250/day, and they couldn't help me much). I've considered senior day care but at the moment it just isn't practical. Our biggest issue currently, following a long rehabilitation, is new onset Type I diabetes that is difficult to control. I've met some terrific people involved in caregiving support on Twitter; I can put you in touch with them if you think it might be helpful.
yes, there are groups for caretakers and caregivers. i did that with my sick and then dead husband. you need to google the local hospitals and find the list of their groups. they are often grief groups and support groups for people caring for someone who is ill. shoot, i don't know about ironton, but in cities and stuff. it's still worth googling and searching. if not, love, consider starting one or havign your local hospitale do that. seirously. so many people are in your husband's shoes and in kathy's. love love love
I feel for you and your husband. It must be incredibly difficult for him. You can get online information from Family Caregiver Alliance (caregiver.org). They are wonderful. I used to work for them. There is also the National Family Caregivers Association. The Google keyword for searches is caregiver. With some luck, perhaps you can find something in your area. Best wishes in this very difficult task.
Often, no one takes care of the caretaker, as I rudely found out, and we die early. There needs to be a bill of rights for caretakers and doctors, nurses, and family members need to read it.

Let's jointly write one!
All I can do for my sister is give her hours away with out a worry. It's not much but between my brother and daughter and I we try. I try to make her laugh to to show her life is still hear waiting. I say give him hugs and love and take care of him when he's home that will help.
thank you lunch lady for your suggestions--and zumalicious, I think a bill of rights is a good idea...and a maybe a list of expectations too, and a list of ways to support the caretaker. btw, in our situation, my husband and I talked about his feelings and we agreed to make an appointment with a therapist so he has (and we have together)someone outside to talk to and we can jointly have a safe place to discuss this and other issues...like all stressful situations, it brings up feelings from other events in our lives and highlights other difficulties we are facing. I also got some numbers to give to his family from the caregiver.org website (thanks steve) so they can look into some resources. And, I talked about this with my mom and she wants to talk to my husband to give support because she was the caretaker for my grandfather before he died for a long time....so thank you OS caregivers!
Zumalicious' comment rang a bell so I googled Caregiver Bill of Rights and this is what I found:

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
Very important post, thank you Melissa. I have had the most support for this through Alanon actually, which is a place that can be misleading because most people think it is about knowing an alcoholic (friend or family member), but the steps and work is about learning wonderful self-care and learning about the many choices we sometimes close ourselves off to (from this view point, coming out of alcoholic homes, etc.)

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!
Kate, thank you for the alanon suggestion...it makes sense. I saw that was a suggestion for lunchlady and her blog, and it started me thinking when I saw it. And the idea of being a caretaker, as if some people gravitate towards that role...and yet, some people have it dropped in their lap and it isn't something they are "good" at naturally...I think it is ironic because I think I am the caregiver type by nature, and my husband isn't, and yet he is being challenged in this way....