Role of Caregiver (Mental Tsunami)

Dragging The Line …

I decided to get some advice from the VA medical system. According to their statistics, my feelings are not totally unique unto myself. If you are in this situation, or find yourself there in the future (AARP reports that 60 million people are actively involved in helping an ailing loved one), some of the following will be good to know.  I feel better knowing I’m not the only one that is feeling EVERY SINGLE item on this list at different times. It does have it’s ups and downs, and it is a labor of love that I volunteered for.

How to cope with these feelings wasn’t provided by the VA shrink, I go back in two months. I call it Minimal Health Care. The VA used to be a better health provider, but after the last two illegal wars they too are back logged and maxed out. That being said, even ‘so called’ regular doctors are being trained to make people sicker rather than better, through no fault of their own. They just believe what the text books tell them. That’s excludes the very many doctors who have figured out how to perform unneeded surgeries, ways to get kick backs from pharmacies, and other immoral methods to monetize their ”business.” Here’s some of the feelings listed by caregivers:

 

Anger:

 

– For being trapped

 

– That others in the family don’t carry their weight

 

– At the health-care system and health care professionals

 

Depression:

 

– Because of an emotionally and physically draining experience

 

Fear:

 

– That they may be next in line; particularly with inherited conditions

 

– Of not being able to handle the situation

 

– Of what others are saying about how the situation is being handled

 

Grief:

 

– For the way things used to be

 

– For the way the care receiver used to be

 

– For lost relationships-emptiness

 

– (Chronic grieving – one loss after another, with no time to complete the grieving process in between losses).

 

Guilt:

 

– For wanting “out” of the caregiver role

 

– For wishing the care receiver would die

 

– For not having done enough – and not being able to do more even when you do all you can

 

– For past behaviors

 

Helplessness:

 

– The situation is too great and there’s no way to control it

 

Shame:

 

– Of the parent (or spouse) for the failings – for what they were or are now

 

– Of self for being ashamed

 

Worry:

 

– That they may later feel they did not give enough

 

– That their best was not good enough

 

I’m just riding the wave, riding the wave. Diving downward to find and pull the cork out of the ocean, to make the land dry so I can catch my breath. Here’s to the dry land under the water, cheers.

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27 thoughts on “Role of Caregiver (Mental Tsunami)

  1. I’ve heard this from so many people who are caregivers for their aging and often deteriorating parents! I hope you find a group of supportive people who are dealing with the same situation, since all those feelings seem like the human response.

    Liked by 1 person

    • I’d have not believed it was a normal human response until experiencing it. I have tended to believe the gossip of the care receiver in the past. I’m really sorry I did that now. I guess life lessons never stop, and for that I’m grateful.

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  2. Hi David,
    I can very much relate to your burdens in caretaking. I have been going through something similar the last couple of years myself. My situation with my mom and step-dad is very complex, ended involving lawyers and courts and even though my step-dad passed away in March, the craziness continues.

    Thanks for sharing from the heart and please know you’re not alone!

    I think the song link says it best, All things Must Pass.

    xxx
    Debra

    Liked by 1 person

    • I think that a lot of life experiences can only be understood by others that have or are living the same situation. I really appreciate your feedback, there’s comfort in knowing it’s ”not just me.” Thanks Debra.

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  3. Dave, I commend you for taking on this challenge. It’s certainly not easy.

    Decades ago, I worked in the field of gerontology and developed a project designed to help men who were caring for older relatives. In hopes that it might provide some useful info, I’m including a link to post I wrote about the project: http://carolahand.wordpress.com/2014/02/12/in-honor-of-caregivers/.

    Of course, many things have changed since then – budget cuts and privatization have taken their toll. The newer reauthorizations of the Older Americans Act of 1965 created “Aging and Disability Centers” (ADRCs) that may provide some resources or services to help you (respite, in-home care, etc.). You should be able to find info for local ADRCs online. You can always email me if that would be helpful (carolahand@gmail.com).

    I send my best wishes to you, Dave.

    Liked by 1 person

  4. Hi Dave,

    The ‘care for the carer’ part of caring is so hard, and so important. I remember my mother in law being ill (and forgetting things) and she would keep telling everyone that my husband hadn’t been to visit her. I remember him feeling in despair, then furious with her, then guilty for feeling furious, then angry with the people who would say “didn’t you visit…?” then upset with himself. It’s such a topsy turvy, emotional and difficult wave, and it’s so hard to get your bearings. I remember wanting to weep, pull out my hair, and shout at someone, and it wasn’t my family.

    Take care of yourself, Dave, as best as you can. It’s tough. Time by yourself, to stare at the tiles in the bathroom helps. Someone who can care for you, listen and share is helpful. But the mother you thought you’d have, the life you do have, and the journey you are on, these things matter a lot too, and you count too. My supervisor used to say that it’s important to put on the oxygen mask and look after yourself, otherwise nobody makes it.

    All the strength. It’s a hard journey.

    Liked by 3 people

    • Despair, furious and guilt. Yes, it’s a daily circle of those emotions I swim in. I have begun to visualize a plexi-glass barrier between her words and myself, trying to imagine the negativity bounce off before they get to me. Sometimes it works, but I do need ”oxygen” quite badly also. t/y nicci :)

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  5. David,
    I’m sending a virtual oxygen mask to you right now. I love the feedback you’ve gotten and I think everyone our age who’s parents, grandparents, and older relatives have had the privilege to live to a ripe old age, are going through something similar. YOU ARE NOT ALONE. yes, I did yell that! Talk to friends, they must be going through something similar. Yes, many of our mothers have gone dark and angry. Reach out. I know your first inclination is to close up, but reaching out and asking for help, even just a hug or a conversation will help immensely.
    virtual hug too,
    xoxJ

    Liked by 1 person

  6. Perhaps your mother is feeling the same anger, depression, fear, guilt, etc. that caregivers feel. It wouldn’t be surprising if many avoid thoughts of mortality until suddenly they’re 70 years old, then acknowledging the end of one’s life pounds one’s soul into pieces – doing a major league number on one’s mental/spiritual health.
    Overheard a caretaker at a public gathering mention “I want to kill her!” as he discussed the elderly relative he was caring for.
    Perhaps what your mother needs is help preparing for her transition, as many have great fear of dying for possibly experiencing the hellish realm unfortunately taught in certain organized religions.
    Just a suggestion, but sharing/reading some personal accounts of NDEs, because they’re so inspiring and led the persons who’ve come back to have no fear of death, could result in your mother becoming less afraid. Plenty to print at Near Death Experience Research Foundation – nderf.org. Here’s hoping your mother and yourself experience her remaining days in a richly blessed way.

    Liked by 1 person

    • Tried that Jerry, and more. Anything helpful she says ”makes her head pound.” She’s simply not open to learning and prefers the anger / victim role. I’m sure she has her own justifications for her miserable attitude, but I do know others older than her that seem to handle aging MUCH better than my mom. t/y for your comment buddy. I’m getting to the end of my rope.

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  7. Depression in family caregivers for the aged tends to be the rule, rather than the exception. It’s incredibly difficult and demanding work, as most older people tend to become more negative and rigid as their memory deteriorates. 30 years ago the federal government provided support to family members in this role – especially when it became apparent that the incidence of Alzheimers was increasing as people lived longer.

    It was advantageous at all levels of government to offer this kind of support because it tended to keep older people at home longer. Caring for them at home is always far cheaper (for state and federal government) than putting them in a nursing home.

    Then Clinton and Bush Jr cut the hell out of the social service budget to cut taxes on the rich and increase military spending. And these support programs vanished and family members were essentially on their own.

    One thing I really like about New Zealand is they still offer this kind of support. I have a friend whose husband has Alzheimers and she got so depressed she had to go on medication. She has since found support, consisting of 5 respite days a month (where he goes somewhere else to stay) and a day program 3 times a week. A social worker comes to pick him up and take him to play bingo and tambourines.

    The only advice I would have to offer is to decide where your own personal limits are, i.e. you gotta decide how long you can continue to put up with this situation. If there is no support at all for caregivers (county, state, nonprofit) where you live, I think you’ll need to entertain the possibility that your mom may need nursing home care. At least that way you would be sharing the load with people who are professionally trained (and paid) to do this kind of work.

    Sometimes it becomes much easier for family members to maintain a rewarding relationship with an older parent if they confine themselves to regular and frequent visits, and leave the full time caregiving responsibility to people who are professionally trained.

    Liked by 1 person

  8. There’s nothing here for that here in the land of dumb. I’ve looked into assisted living and it’s twice as much as her social security payment. There’s no outside structured help anywhere around me. Yesterday my grandson came over to spend the night, and her rudeness made him decide to go home. I live for visits from my granddaughter and she’s afraid of her. I sometimes think I can take no more, then boom, it’s another day of the same thing. Sorry to sound so depressed right now, but I am depressed right now.

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    • Assisted living is hard to find funding for than nursing home care. Medicare will pay for nursing home care, provided you establish that living at home is no longer an option (i.e. you rent her house out to someone). In my grandfather’s case this left a deductible (1/3 of the cost). Medicaid will pay the deductible, provided your mother spends down her assets first. The family may not be happy about the idea of spending down assets (there will be nothing to inherit) but there are creative ways to do this. The IRS allows people to “gift” $10,000 a year to each future heir while a person is still living.

      I don’t think it hurts to check out the options. The odds are that your mother’s condition will get worse . Sometimes planning for the future can ease the depression somewhat – even if you’re looking at professional care 1-2 years in the future.

      http://www.medicare.gov/what-medicare-covers/part-a/paying-for-nursing-home-care.html

      Liked by 1 person

  9. I’ve been there, David and understand. When my mom died I was sure she took part of me with her. I was so tired and felt old. What I learned from all of it is to first be kind and gentle with yourself. Don’t take what she says personally, and don’t try to change her mind about anything–it won’t work. Just smile when she goes on a rant, and say, “You’re probably right.” My mom just wanted me to listen, but I took things personally and let the past affect me. I just should have flowed. Of course, if there’s anyway you can get some help so you can take a few hours away that would be good too. It’s damn hard that’s for sure!

    Liked by 1 person

    • You understand and that’s really helpful to me Michele. I really thought this was a unique situation, but turns out it’s totally predictable. I do think much of it is simply a bad attitude on her part. t/y for leaving this comment and good advice, I appreciate it.

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  10. I went through it too, hipmonkey! My husband died of a wasting illness in 2012, and caregiving was an absolute endurance test, beyond what anyone could imagine. I often thought of myself as ‘the hanged man’ in the tarot deck. I had promised to see him out, and I believed that it was the right thing to do. Sometimes I tried to see it as for my own spiritual good, and although that wore thin I believe it did help. The confinement was so great that after leaving the house for 10 minutes, to grocery shop and so on, I began to panic inside. After he transitioned, it took a good two years to find out who I was again. I wish I could tell you… this works… do this… etc. All I can say is get away as often as you can for a few moments by yourself, and if it helps, do as I did and think of confinement as a time of purification in which to build strength. I think that’s what kept me alive in spirit.

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    • I so much appreciate your comment. You don’t know that you’re a bit of a hero to me. I love your writing so much. It really does help to hear from others that have been through something like this. In the beginning I had no clue it would be so mentally draining, but I’m sure I’m learning a lot and will get through this a better person. t/y!!!

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