Caregiving: I’m frustrated and exhausted.

Posted by dem2301 @dem2301, Jun 18, 2019

My post tonight is nothing but venting and a bit of poor me. I'm caring for my husband with Parkinson's and Lewy body dementia. His daily care demands are exhausting some days besides taking care of our home, bills etc. and attempting to take care of myself which I'm not really doing very well. If I would have the listened to the nurse of 37 years(meaning me) I would have advised myself to go to the emergency room after being sob of breath and having chest pressure but no I needed to make supper, do meds, blood sugars, help him to the bathroom and be at his beck and call. I do feel better now but am so tired and I know he will call me at least twice tonight to help him. I know this sounds pretty mixed up but I just need to vent. Unless your living this no one really wants to listen. Including my own kids. It's impossible to even carry on friendships anymore, I'm unavailable when I'm invited which is becoming less frequent all the time
I don't leave him anymore unless it's to run a short errand. I had breast cancer and treatment last summer, I never skipped a beat. The day after surgery I resumed my daily care routine, drove 40 miles one way for radiation and still cared for him. I had carpal tunnel surgery in may, came home and took care of him. Like I said there is a bit of poor me involved tonight..i better quit for now. Thanks for letting me vent.

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@kimspr3

Dear Scott, I can not thank you enough. I will take your advice and look into what you suggested. My Uncle Sam is my priority. I want to give him the dignity he deserves. WW11 in Germany, he was the gunner in a military plane when it was shot down. Have you ever thought of writing a book about your experience. I think it may help others.

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You are too kind, @kimspr3 I love to write, but don't know if anyone would be too interested in the ramblings of an old man 🙂 But I will give it some thought.

A side note -- my dad was a 1st Lt in the Army in WWII. He was awarded a Bronze Heart in the field and after landing on Omaha Beach fought across Europe and was a liberator of Langenstein Concentration Camp. He passed away before my Mom and his desire was to be cremated. There was family discord over the disposition of his ashes. My mom also wanted to be cremated and one day late in her life called me and said 'Scott, I'm worried that your dad and his service will be forgotten if he doesn't have a grave. Can you do something about this for me?' I was able to finally convince my sisters to give some of the ashes they kept and I found that the family actually still owed two plots in the cemetery where her folks and several other family were buried long ago. I designed a stone with my mom's agreement. Since Dad had never had a service, when Mom died we did a double service and were able to have it done with military honors.

Now no matter what, his service, as they say, is 'carved in stone'.

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@IndianaScott

You are too kind, @kimspr3 I love to write, but don't know if anyone would be too interested in the ramblings of an old man 🙂 But I will give it some thought.

A side note -- my dad was a 1st Lt in the Army in WWII. He was awarded a Bronze Heart in the field and after landing on Omaha Beach fought across Europe and was a liberator of Langenstein Concentration Camp. He passed away before my Mom and his desire was to be cremated. There was family discord over the disposition of his ashes. My mom also wanted to be cremated and one day late in her life called me and said 'Scott, I'm worried that your dad and his service will be forgotten if he doesn't have a grave. Can you do something about this for me?' I was able to finally convince my sisters to give some of the ashes they kept and I found that the family actually still owed two plots in the cemetery where her folks and several other family were buried long ago. I designed a stone with my mom's agreement. Since Dad had never had a service, when Mom died we did a double service and were able to have it done with military honors.

Now no matter what, his service, as they say, is 'carved in stone'.

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That is so nice! My brother retired from the Navy. His wife, my sister-in-law, has his ashes. The plan is to bury their ashes together when she passes.

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@IndianaScott

You are too kind, @kimspr3 I love to write, but don't know if anyone would be too interested in the ramblings of an old man 🙂 But I will give it some thought.

A side note -- my dad was a 1st Lt in the Army in WWII. He was awarded a Bronze Heart in the field and after landing on Omaha Beach fought across Europe and was a liberator of Langenstein Concentration Camp. He passed away before my Mom and his desire was to be cremated. There was family discord over the disposition of his ashes. My mom also wanted to be cremated and one day late in her life called me and said 'Scott, I'm worried that your dad and his service will be forgotten if he doesn't have a grave. Can you do something about this for me?' I was able to finally convince my sisters to give some of the ashes they kept and I found that the family actually still owed two plots in the cemetery where her folks and several other family were buried long ago. I designed a stone with my mom's agreement. Since Dad had never had a service, when Mom died we did a double service and were able to have it done with military honors.

Now no matter what, his service, as they say, is 'carved in stone'.

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@IndianaScott How very nice. My dad was onboard the USS enterprise at Pearl Harbor, and was awarded several medals in the course of his military service. He never spoke about it.
Ginger

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@gingerw

@IndianaScott How very nice. My dad was onboard the USS enterprise at Pearl Harbor, and was awarded several medals in the course of his military service. He never spoke about it.
Ginger

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@gingerw My dad spoke of his service only one time. We were visiting him after his retirement. Late one evening I said I was going to take our children out for a walk on the beach. My dad said he wanted to come along -- something he never did. Part way into our walk he said he had something he wanted to tell the kids. For the only time in my life he told his stories of the war --- finishing with 'I just want you grandchildren to know how horrible war is, what I had to do, and how I was just plain lucky to live through it.'

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@IndianaScott

@gingerw My dad spoke of his service only one time. We were visiting him after his retirement. Late one evening I said I was going to take our children out for a walk on the beach. My dad said he wanted to come along -- something he never did. Part way into our walk he said he had something he wanted to tell the kids. For the only time in my life he told his stories of the war --- finishing with 'I just want you grandchildren to know how horrible war is, what I had to do, and how I was just plain lucky to live through it.'

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@IndianaScott Wow, what an impact that made, I bet. We found out about my dad saving a fellow sailor during an onboard fire, in 2000 or so. Even then, before my birth, his actions were my role model; this sailor was a different race than my dad, and interracial friendships were not common. In 2004 he drove from Reno to southern CA to be at the commissioning of a naval vessel named after that sailor, who had become a hero. He didn't want the family to know he was there, just wanted to be there.
Ginger

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@cindylb

Thank you for your support Ginger, I really appreciate it.
I am already 'run down', ha ha. That ship has sailed. When I had breast cancer I found great support from friends who also had breast cancer. My husband and I have great friends but day to day.....it's really on me to keep things moving forward. I have always been that person who can handle so much more than others and I guess now I'm concerned that I may have hit my limit. I'm looking into resources and getting great support here on the Mayo site, so that's a help.
Hugs

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@cindylb Hi seems such a lame greeting when your life is so tough. It’s funny (not) when everyone thinks you’re tough enough to take it ALL. Friends don’t want to hear about things (they think that they’ll catch what you have 🤭). They just don’t understand that talking can be the best therapy for you. You can always talk to us on MayoClinicConnect!
You said that you “may have hit your limit.” What resources are you looking for? In-home care for your mother, MIL? Can you check with senior services in your area? A senior care specialist may be able to help you find resources, or explain Medicare and Medicaid and how they might help. Please stay in touch, we care

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Hello @cindylb,

Thanks for your very open, honest post. Being as vulnerable as you have been shows courage, and I appreciate your courage. It is hard to keep going when you have so many responsibilities. I'm wondering if you or your mother or mother-in-law have churches that might be willing to step in and help with some of the care you give? For example, my church provides rides to doctor's appointments, etc. when family members cannot do it. They will also provide meals.

In addition to churches, there are many senior centers who have volunteers who will be willing to lend a hand.

In the city where I live the public library will bring books to shut-ins and visit for a while. There are also meals-on-wheels that can bring by a hot meal once a day.

You might try just googling "services for senior citizens" in your area and see what you come up with.

Financial constraints can make this caregiving responsibility especially stressful, so please take care of yourself. Enlist the help of others so that you don't have to carry the burden on your own shoulders. We care about you!

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@IndianaScott

You are too kind, @kimspr3 I love to write, but don't know if anyone would be too interested in the ramblings of an old man 🙂 But I will give it some thought.

A side note -- my dad was a 1st Lt in the Army in WWII. He was awarded a Bronze Heart in the field and after landing on Omaha Beach fought across Europe and was a liberator of Langenstein Concentration Camp. He passed away before my Mom and his desire was to be cremated. There was family discord over the disposition of his ashes. My mom also wanted to be cremated and one day late in her life called me and said 'Scott, I'm worried that your dad and his service will be forgotten if he doesn't have a grave. Can you do something about this for me?' I was able to finally convince my sisters to give some of the ashes they kept and I found that the family actually still owed two plots in the cemetery where her folks and several other family were buried long ago. I designed a stone with my mom's agreement. Since Dad had never had a service, when Mom died we did a double service and were able to have it done with military honors.

Now no matter what, his service, as they say, is 'carved in stone'.

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Hello Scott, Your Mother wishes came true because of you, Your Dad Earned His Medals you acknowledge his Military Mission, Head Stones are Classic, Beautifully done but I wonder after Liberating the Concentration Camps and seeing what he saw around him did he ever talk about it with you to help free his memories? I'm a very sensitive person wether it good or bad being there to help is a good feeling.
Hey, lets take a vote, Think about a book to help others. SMILE. I have been asked to do the same but for me having PTSD do I want to go there?

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@kimspr3

Hello Scott, Your Mother wishes came true because of you, Your Dad Earned His Medals you acknowledge his Military Mission, Head Stones are Classic, Beautifully done but I wonder after Liberating the Concentration Camps and seeing what he saw around him did he ever talk about it with you to help free his memories? I'm a very sensitive person wether it good or bad being there to help is a good feeling.
Hey, lets take a vote, Think about a book to help others. SMILE. I have been asked to do the same but for me having PTSD do I want to go there?

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Hi @kimspr3 Thank you for the kind words. My dad only spoke of his war experiences one time. He wanted to be sure his grandchildren knew the horrors of war so one night he told them all about it. One time and only one time.

I'll have to think about a book I'd recommend. Last one that made me smile a lot was when I reread one of Dr. Seuss' classics!

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