As a caregiver, what helps you the most?

Posted by canadaanne @canadaanne, Mar 27 7:47am

What do you do to help your own wellbeing? What has helped, and what hasn’t?

I know it is important to look after myself so I can give the best care I can. I also know that at times everything feels so overwhelming that I don’t want to do anything.
I have found my daily walks with my dog help. I’m thankful that I have to do this - even on days when I don’t want to go, I feel better having done so.
Massage - I have a great RMT who told me my only job while having a massage was to just breathe. The hour or so of just focusing on breathing very therapeutic, aside from the benefit of the actual massage.
The love and support of family and friends has also helped me - whether it a quick phone call or text, or a visit or walk.
Chatting with people online in the forums here has also been helpful.

Take care all. It’s a journey none of us want to be on, but here we are.

Interested in more discussions like this? Go to the Caregivers Support Group.

Profile picture for sporkandromi @sporkandromi

@richardfrancine
Thank you for sharing your situation. I can relate for sure. When my husband was admitted into the hospital about a month ago just for two nights, I was almost happy to have a night alone. This is a hard life, no doubt. I have a cat and a dog-my only solace right now. I don't know what i would do without them. I wonder if they have any idea how precious they are.
But, I feel the same as what you feel-the constant cleaning up, it's endless. The depression is sometimes like one of those weighted blankets, just crippling. I have days that I feel like I haven't done enough, and when I do something for myself, albeit it minimal, I feel guilty. Its tough, but I feel like it is very skill building.
Stay strong!

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@sporkandromi it IS hard- it is a lonesome road— sending hugs your way for everytime you need one— you cannot let yourself feel guilty for needing a little break- this is the hardest job you’ll ever do— and you are a good wife. I hope your day is a good one.

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Profile picture for sporkandromi @sporkandromi

@maritah49 I understand your situation. I am in a similar one. Caring for my husband, and I do everything, and have to be 100% financially responsible. It's been my biggest challenge in life thus far. I keep telling myself, there's a reason this is happening. There is something to learn from it all. The ol', "that which doesn't kill us only makes us stronger".

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sporkandromi
So true!

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Profile picture for jett56 @jett56

@richardfrancine I am in almost the exact situation. My husband angers easily these days. He has to be in control. He tells me I am stupid and don’t know what I am talking about. He is hard to communicate with because he can’t keep straight what he said and when I answer he says that isn’t what I said. I can’t win for trying. what do I do. He is now becoming confused with how the thermostat works. Our house was at 57 degrees last night. It woke me it was so cold. He keeps switching from heat to ac. Help

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@jett56
I went through 6 months, and 3 hospitalizations, of this type of thing with my wife - and much more: accusations of cheating, not caring, anger on anger, trying to control and trap her, etc. The last hospitalization, in February, finally seemed to get the medication mix correct. We have had a month and a half of stable life. She's calmer, at peace, compliant with medications, but can still enjoy things. We just got back from several days in Yosemite. Her dementia is progressing, which we can tell for sure, and will need to adjust things again, but have a better idea of trying to stay ahead of it. Dealing with medications is hard - many people struggle to have someone on quite powerful drugs, some with potentially serious side effects. However, having someone live in fear, paranoia, anger, etc., etc., is also not "right" - I would argue. The person with dementia is suffering, as is the caregiver. This is not easy, but it is a reality. I would suggest talking with the psychiatrist and neurologist about a plan.

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I copied these things down at one time to help me better manage my changing relationship with caregiving to my loved one. Perhaps they will be helpful.
When frustrated, remember to take a deep breath in and out and counting to six before speaking.
Agree, never argue.
Divert, never reason.
Distract, never shame.
Reassure, never lecture.
Reminisce, never say remember.
Repeat, never say I told you.
Do what they can do, never say ‘you can’t.’
Ask, never demand.
Reinforce, never force.
When asked, always say something positive about the situation.

I don't care for the use of the word “never”. Perhaps “resist the impulse to” is better.
A big hug to you all. We are not in this alone.

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Profile picture for summerlibra @summerlibra

I copied these things down at one time to help me better manage my changing relationship with caregiving to my loved one. Perhaps they will be helpful.
When frustrated, remember to take a deep breath in and out and counting to six before speaking.
Agree, never argue.
Divert, never reason.
Distract, never shame.
Reassure, never lecture.
Reminisce, never say remember.
Repeat, never say I told you.
Do what they can do, never say ‘you can’t.’
Ask, never demand.
Reinforce, never force.
When asked, always say something positive about the situation.

I don't care for the use of the word “never”. Perhaps “resist the impulse to” is better.
A big hug to you all. We are not in this alone.

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Wonderful advice. I’m trying to memorize it, but in the meantime, it’s on my bulletin board. it truly works thank you.

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Profile picture for jett56 @jett56

@richardfrancine I am in almost the exact situation. My husband angers easily these days. He has to be in control. He tells me I am stupid and don’t know what I am talking about. He is hard to communicate with because he can’t keep straight what he said and when I answer he says that isn’t what I said. I can’t win for trying. what do I do. He is now becoming confused with how the thermostat works. Our house was at 57 degrees last night. It woke me it was so cold. He keeps switching from heat to ac. Help

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@jett56 I’m sorry. It IS often so difficult to communicate with them. They get so confused and in turn blame it on us that the conversation has gone south. My husband sometimes says things like “ok! Let’s start this over (conversation)” so he can ‘educate’ me on what we’re talking about. Sometimes he will also say “you need to learn…” in a very belittling way. It’s frustrating, but even more hurtful. We do the circle conversating, “you said, I said, I thought, no you said…”. on and on. Exhausting. But trying to learn to not to engage is sooo hard to practice. I just wish you luck (and patience)!
We all get it, so you’re not speaking to deaf ears.

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Profile picture for sporkandromi @sporkandromi

@maritah49 I understand your situation. I am in a similar one. Caring for my husband, and I do everything, and have to be 100% financially responsible. It's been my biggest challenge in life thus far. I keep telling myself, there's a reason this is happening. There is something to learn from it all. The ol', "that which doesn't kill us only makes us stronger".

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@sporkandromi I understand too. I'm a retired nurse (never did Neurology so I'm learning along the way.) I have worked long shifts and I am fortunate my husband sleeps through the night so I asked myself "Why is this so overwhelming?" You hit the nail on the head. I am not only doing 24/7 nursing, I am also maintenance, house keeping, Physical therapy, Occupational therapy, dietary, care management, the list goes on and on for us. While we can't fix each others problems, it's good having people in similar situations to validate feelings. To the person whose husband was in the hospital and she was "almost" glad to have the night alone, I was in a similar spot and I wish we could be 100% glad to have the rest, but as compassionate caregivers it's hard to just let go. Thank you all for being here.

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Profile picture for lkbous @lkbous

@jett56 I’m sorry. It IS often so difficult to communicate with them. They get so confused and in turn blame it on us that the conversation has gone south. My husband sometimes says things like “ok! Let’s start this over (conversation)” so he can ‘educate’ me on what we’re talking about. Sometimes he will also say “you need to learn…” in a very belittling way. It’s frustrating, but even more hurtful. We do the circle conversating, “you said, I said, I thought, no you said…”. on and on. Exhausting. But trying to learn to not to engage is sooo hard to practice. I just wish you luck (and patience)!
We all get it, so you’re not speaking to deaf ears.

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@lkbous oh my goodness- you poor thing! My husband acts like that too…i call it his dragging me down the rabbit hole…frustrating indeed! Hang inbthere..and if u figure out a way to cooe that works well..please let me know! Same boat

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Profile picture for rebeccagrover @rebeccagrover

@lkbous oh my goodness- you poor thing! My husband acts like that too…i call it his dragging me down the rabbit hole…frustrating indeed! Hang inbthere..and if u figure out a way to cooe that works well..please let me know! Same boat

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