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Caregiving: I’m frustrated and exhausted.
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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@debiobrien Welcome to Mayo Clinic Connect. We're glad you found us just a few days ago! It sounds like you have had a rough journey. Have you thought about looking in to getting some help for yourself? Perhaps a caregivers support group in your area, or some individual therapy? Caring for a loved one, in this case, two loved ones, can be the hardest job ever imagined. Now is the time to start thinking about yourself, so you can help create "A softer place to land" when your mother passes. You deserve this, and might find that your mother would certainly be supportive of this. Finding time for yourself, and developing some interests that will serve to change your focus for a while, is critical for your mental and physical health. I hope you will come back, and let us know what steps you have taken to get some assistance. Would you be agreeable to that?
Ginger
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4 ReactionsHello @debiobrien Thank you for the moving post. I could feel your sadness and pain in your words. I hope your mom and your aunt both are doing OK today.
I have always said caregiving is a far tougher job than the vast majority of folks realize, but was taken aback as you said it beat your work as a cop for being tough. I was sorry to read you were injured in the line of duty. I am pleased you are here with us in the Mayo Connect caregiver community!
While I was caregiving, and like you found myself giving up so many things in my life, I began to make a list. It was the things I wanted to do once I could get out of the house. They were mostly very small things like write to an old friend, visit the only friend who stuck by me during my wife's illness to thank him, likewise with the one friend who stayed supportive of my wife, clean areas of the house, hold a garage sale, etc. I still miss my wife more than I can imagine and fight depression daily, but still keep this list going because it helps keep ME going! I never cross an item off the list as complete before I add one new one to the bottom of the list. Might not be for you, but just an idea that I found, and continue to find, helpful.
I hope you find the support of this group helpful.
I also hope the sun is shining wherever you are today -- that always helps me.
Strength, courage, and peace
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5 ReactionsI am so sorry for what you are experiencing.
I like to think that caregiving is much like forgiving. We do it for the other person, but just as many benefits come back to us. Your love and time and work for your mom and aunt will be something that you get to have forever. Hard to feel that now perhaps, but it can support and strengthen you when they are gone.
I heard something when I started on my caregiving journey: the most important minute in our life is the minute at hand. In the hardest moments I make myself think that, and it brings my thoughts and focus back to what I can do in that moment to improve my husband’s experience, and what the moment can bring or do for me.
Find comfort in knowing you are never alone. We are out here.
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5 ReactionsGinger & vicky I hear you and i know you are right but in my 64 years i have NEVER made myself first everyone and everything has always came first. right done to the tiniest thing. I would not even know where to start to make myself first and would feel selfish trying it. I dont even know what my interests or hobbies would be because i have never taken the time to look for any. I have spent my entire life trying to survive thru many many years of horrific abuse of every kind in the world and protecting everyone else i can from it. now all the abusers are dead except 1 and i still try and protect my mom from that person and its hard because its her son and my brother which would be happy to see me gone. He became my father and is mean and abusive just like our dad. I was a cop for 20 years and got severely injured in the line of duty and lost my job in 2013 due to the injuries and have been lost since then. all i know is to take care of people, help them out and make sure they have what they need, not your typical cop i know. i come last. im used to that way. i would not ever know where to start to think about myself first. it just would not feel right. i have been in many support groups for survivors of abuse of all kinds but im pretty far gone they dont really help when i tell all the details of my life and abuse people freak out and wonder how am i still alive and how did i make it thru all that. i didnt really make it thru all that it left scares that will never heal. and thats why i choose to be alone. never married, no boyfriends for many years i do best by myself. i appreciate your comments and again i know your right my brain just does not compute that way but maybe one day it will. thanks again and god bless.
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3 Reactionsmy big issue is i am alone and when my aunt and my mom are gone im alone. i have never married due to the abuse and dont have many friends due to the lose of my job and being disabled myself and taking care of the 2 of them and when they are gone i will be like ok what now. !!
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3 Reactionssome of my friends keep saying i need to go on a vacation and just have some fun that mom and aunt are fine on their own for a few days. so i searched and search for a place i might like to go and didnt find anyplace close enough for just a few days away. its so hot in florida and to hot to do to many outside things. i thin the only thing i really love is the carolina mountains in the fall. the only nice memory of my life i went there in 2012 and saw the colors for the first time in my life and it was breath taking. i soft of imagine myself heading for the mountains when i do lose my mom. that seems to be the only place i have ever felt true peace in my life.
Im so sorry for the loss of your wife and i will pray for you for more peace and comfort and for the depression to life and go away and i understand what thats like myself.
I try to find thing that maybe me and mom could do and mentioned to her today about maybe going to [play bingo or go to a movie and she seemed to like both idea. she is doing well but my aunt is housebound and not well. but i really want to spend some fun and quality time with my mom and have some fun memories since most of them are bad memories right now . its hard to find things a 92 year old lady would enjoy or even be able to do and especially in the town we live in not much to do here/.
well take care of yourself and i wish you all the best and happy times to come your way and many blessings. debi
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3 ReactionsHi @debiobrien I understand! Due to many business oriented moves I, too, have few friends. Then the ones we did have ghosted when my wife got her brain cancer. Caregiving is incredibly isolating for sure! Left us with one each and they were distant in my ability to do what friends do until my caregiving days ended. The good news was they understand. Plus I have gone back to a few folks in my past, several of whom I haven't seen or spoken with in decades now, but who were willing to reconnect a bit. It has helped me over time. Plus much to my surprise I got a rescue dog and she has become a great companion!
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3 ReactionsThank you, @debiobrien What a great idea to come up with ideas of simpler things to do together! I remember when my mom was in her 90s we went back to playing canasta, which we hadn't done since I was so young I couldn't hold playing cards in my hand!
I also understand what you explain about the outdoors. I get recharged more than any other time when I am in the woods! Quiet, beautiful, and it seems I can walk the same path over and over and see different things. It is the time I also calm down more than others.
I hope you make it back to those mountains in the Carolinas!
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3 Reactions@debiobrien I understand what you are saying. Many times the abused want to be the rescuer, and your career in law enforcement was ideal for that. I have struggled with emotional abuse and had to work hard to overcome the effects. My sister says she cannot believe how strong I am. I say I worked hard to use my experiences as a stepping stone and not millstone, but it was not easy. Let yourself think of things you'd like to try, or places you'd like to go. It can be as simple as a picnic under trees with a soft breeze and birds singing. Or as complicated as a Euorpean trip. Feel the internal calm it brings, and the positive way you feel. Then make some movement towards accomplishing it. Don't put a timeline on it. You might find small steps can be accomplished. And find someone who can spell you so you and your mother can make some happy memories. I promise you will cherish them, and be grateful you made the effort. You never know what you'll accomplish until you try.
I hope your day goes well,
Ginger
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2 Reactions@debiobrien I’m just so sorry for the difficult situation you are in. There is a program in your state that can probably help. It’s Aging Life Care Association. They do have a website but I couldn’t get the URL. I used a program like this to help when my husband’s aunt was 96 and at her end of life. She had no children but always thought of my husband as her son. But, she lived in NYC and we were in Colorado. I found a geriatric nurse care manager who was able to help with finances, finding caregivers, etc. Best thing I ever did! Geriatric care managers have had advanced education in the care of the elderly and most of them are nurses.
I can only imagine how overwhelmed you must feel right now. Do you think your mother and aunt might be open to moving to assisted living? My 96 yr old mother lives in such a place. She gets her meals, housekeeping, bus rides to the doctor and can request help with getting dressed or anything else. She feels very safe and secure and knows that there is a nurse close by if needed.
Two totally different ideas but worth talking about. I hope for the best for you.
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