Going with the flow---

This forum was created for those with an incredibly hard task: taking care of someone they love who is ill.

Going with the flow---

Postby Catherine Poole » Sat Apr 02, 2016 8:18 am

I was torturing myself looking at youtube videos on Lewy Body Dementia and actually came up with some very helpful information that may help some other caregivers. The psychologist from Mayo talked about the caregiver falling into a river and fighting the current to get out until they were exhausted. Much like when you get caught in a riptide the advice is to float on your back and eventually it brings you back to shore. Same thing here, if you fight the predicament you are in, watching your loved one with disease and wishing for a "normal" life it exhausts you! So try to go with the flow instead. If I hear one more time that I have "too much on my plate" I might implode! But I do, and so do you fellow caregivers, and flowing instead of fighting, flowing with it might give you more energy in the huge responsibility you carry on your shoulders. (and get a massage!) By the way, the VA gives caregivers a CD of mindful meditation to practice..
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Re: Going with the flow---

Postby jawillett@comcast.net » Sat Apr 02, 2016 6:51 pm

Thanks for posting this Catherine ..I've learned so much about myself thru being a caregiver and that is..the positive about being a perfectionist (okay and a bit controlling!) has enabled me to ask tough questions of the doctors and oversee it all but the downside is not being able to trust 100 percent that we are doing everything and going with the flow..I always feel like I have to check and recheck and exhausted is what I am..I'm trying to learn to let go and be easier on myself because almost all of this is out of my hands and not something to be controlled...and massage helps too!
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Re: Going with the flow---

Postby Catherine Poole » Sun Apr 03, 2016 6:25 am

I think we have a lot in common. I'm a control freak about his treatment too (or lack of) and right now I have this strong urge to teach the community not only about melanoma but about LBD. His disease is confused with alzheimers and it is much different. There are certain drugs they commonly give for his symptoms that could take him out. But anyway, it is true, you have to let go at some point and trust your care team. And get lots of massages!
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Re: Going with the flow---

Postby jawillett@comcast.net » Mon May 23, 2016 9:40 pm

Catherine, I am thankful these days for the analogy you provided earlier about going with the flow on the river instead of fighting the current . I am using it as a visual these days as my husbands situation worsens and I still find myself occasionally questioning whether or not I have done enough to personally finding a solution to this horrid situation..I'm trying not to fight what is happening and get to the point of acceptance but it is so hard..it seems impossible that others are realizing cure while still a large portion are not..I am so grateful for the support of this site..has been a lifeline for me
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Re: Going with the flow---

Postby Catherine Poole » Tue May 24, 2016 1:02 pm

I am so happy that we have been able to help you. You are certainly a terrific caregiver, never a stone goes unturned. I am fortunate to work with folks like you and others here with the same desire for knowledge. It has always been my method of coping with adversity to research it! Find answers when you can but also know when you've reached beyond the research. Please take care of you Amy, it is your turn.
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Melanoma International Foundation
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Re: Going with the flow---

Postby Catherine Poole » Wed Jun 15, 2016 11:14 am

Well my back went out from being overwhelmed, but this too shall pass. A combination of new symptoms and financial concerns got me there despite my attempts at mindful meditation. When I am stressed, my back gets spasms. So we are dealing with potential UTI vs. a bladder issue, potentially cancer. Will know more next week. After six months the disability kicked in (how do people survive?) if you can't work you can't bring income in. Oh well just venting. Hoping we will hear from you Amy.
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Re: Going with the flow---

Postby jeffb » Thu Jun 16, 2016 1:57 pm

I'm sorry you have to deal with this Catherine. My lower back is my fuse too when it comes to stress with my gut starting to come in as a close second now. I also find it really hard to meditate when I'm wrapped up in stress with the most I can hope for are a few deep, slow breaths and even then, there's that background buzz in my head...and I don't mean my tinnitus, which I have as well.

I'm dealing with a slow but progressive disease my son has and I've noticed that I'm very much in the grieving process and that's completely normal for all of us caregivers when a loved one is in trouble but we may not realize we are indeed grieving. Our loved one is slowly being taken from us perhaps both physically and emotionally. We very much feel that loss and we grieve deeply. We also lose, to a degree, and have to let go of or deeply change, what we had expected and hoped would be our future lives with our loved ones. We grieve that deeply too.

So, if I may suggest, checking out some grief counselling (I've found groups focused on grieving particularly helpful and healingful) and perhaps some counselling for PTSD as well since us caregivers are very much in the middle of that too.

And you have a great, big and really good bunch of people here to support you! Vent early, vent often!

Jeff
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Re: Going with the flow---

Postby Catherine Poole » Thu Jun 16, 2016 2:42 pm

Jeff,
I'm so sorry to hear about your son. Yes, you are exactly right, I am grieving yet he is still alive. It is a crazy state of mind to be in and at times can't make sense of it. But the financial part really got to me and the social security system just isn't logical. So when there's nothing I can do to resolve the issue, the stress goes to my back! I have tinnitus too, boy, are we falling apart. I was tested and told I have the hearing of a 20 year old, but no reason for the ringing sometimes. Meditation is indeed tough to do when the overwhelming feeling has taken hold. I repeat to myself it is what it is and there's no way to undo it. So again, go with the flow~
Not to pry, but has your son been evaluated by an expert? Thank you for your very kind words.
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Re: Going with the flow---

Postby jeffb » Sat Jun 18, 2016 11:50 am

And I've got the hearing of the average 90+ year old. :( Oh well. And I used to be an avid audiophile :x

And thanks for the kind words regarding my son. His disease is alcoholism, a disease which is incurable, chronic in its neurological affects in the brain and progressive if not treated. His condition sets off the caregiver in me with the amplification of being a parent. It's difficult as there is nothing I can do really except to be there for him during his struggle. Like when Rachel was sick, I find that even though I don't have the disease, it affects me deeply with my own set of symptoms in response to it.

One symptom I'm sure you can relate to Catherine is a variation on an old Simon & Garfunkel song: "I see it's 3 AM and my demons have come to talk with me again..." I hope you can sleep, but I know how difficult it can be.

So, we too must seek out treatment. Which is easy to say, but you're doing just that and a great job of it too Catherine. You'll flow along just fine despite the rapids, rocks and eddy currents that come along !!

Jeff
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Re: Going with the flow---

Postby Catherine Poole » Sun Jun 19, 2016 11:16 am

I know that disease well Jeff, it runs in my family. It is curable if your son wants to be cured. In some ways it is easier to cure than obesity because we don't need alcohol to live, but both are the common way our society celebrates every occasion! So he needs to be introspective which I know is difficult. I had a parent with the disease and I even went to Al-anon where I encountered folks much worse off than me. I am going to look for a Lewy Body Dementia support group because it is so unusual. There are millions of alzheimers groups but they tend to be elderly and it is a totally different disease. This one is unique! But your thoughts and words always do help. Thanks for sticking around on the forum even though you are no longer dealing with melanoma.
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Melanoma International Foundation
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