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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debiobrien | @debiobrien | Jul 9, 2019

dont know if this type of posting is allowed if not delete it. just saw it and thought it was great for the caregivers. so be patient and kind to your caregivers and understand their moods sometimes. we do get tired and emotional so just try and understand and dont feel guilty and we all do it out of love.just appreciate us. https://www.facebook.com/Kellyrtreehouse/photos/a.1904026693212179/2415496382065205/?type=3&theater

leeandpat | @leeandpat | Jul 13, 2019

Love that, "I was just trying to help". I'm also learning that my tone of voice makes a big difference too. I need to speak softly when he or I am frustrated or in a hurry. Everything takes so much longer now, so I need to give us extra time to get ready to go somewhere, etc.
My dilemma tonight is asking for wisdom and help for both my husband's and my care during my recovery from a total knee replacement in 10 days that I just found out about this AM. My son will be able to take care of my husband who has ALZ during the first day while I'm in the hospital and that night, but his wife will probably be working and only have a day or so to stay with us. A friend who just had the same surgery is needing round the clock care and I may need to hire a caregiver for both of us. Friends are offering to help but can't stay with us day and night.

Ginger, Volunteer Mentor | @gingerw | Jul 13, 2019

In reply to @leeandpat "Love that, "I was just trying to help". I'm also learning that my tone of voice..." + (show)

@leeandpat Is there an Area Agency on Aging in your county, or senior services agency? Explain your situation. It seems there should be someone like a home nurse to help you out for the needed time? Check with your husband's Dr for suggestions, also. Perhaps someone from your local caregivers' support group will have resources to tap in to? Let us know what you find out, we care here at Mayo Connect.
Ginger

vickys | @vickys | Jul 13, 2019

In reply to @leeandpat "Love that, "I was just trying to help". I'm also learning that my tone of voice..." + (show)

I had to read this twice to see who wrote it, after just reading the first paragraph. Those are almost my exact words to myself in my journal (it took me too long to learn that...!)
You have such an extra load about to hit. I so wish I were there and could help. I’ll - we’ll - be with you in spirit!

leeandpat | @leeandpat | Jul 13, 2019

Dear Ginger and Vicky,
I am applying to the CA ALZ association for $ help with respite for caregivers through a grant and have the name of several caregiving agencies. I have friends who can help out during the day, but will we'll probably need overnight help. Lee has had a problem with incontinence the past 2 nights, so he's going to require a little more care than I'll probably be unable to give him for a few days. I'm canceling several appointments and social engagements as I have enough to keep me busy now including 3 pre-op doctor, labs appointments, etc.-one is almost 1 1/2 hours away. That's not too much of a problem since I can drive-now. I'll keep you posted on my progress. Thanks for listening! 🙂 Pat

Ginger, Volunteer Mentor | @gingerw | Jul 13, 2019

In reply to @leeandpat "Dear Ginger and Vicky, I am applying to the CA ALZ association for $ help with..." + (show)

@leeandpat Pat, there are agencies that specialize in respite care. And a couple of nursing orders of Catholic nuns who do overnight care. The big one I know of is Sisters of Mercy, also Sisters of St. Joseph of Carondolet. The second one has a mother house in Brentwood [Los Angeles area], where my sister was a sister before she left the order. Can Medicare help out at all?
Ginger

leeandpat | @leeandpat | Jul 13, 2019

Thanks for the info. We live in the mts. away from services such as that . My mom had good support from a Catholic agency in Ohio but I can't remember the name.

No. Medicare only sends out caregivers a couple hours a week post-op and then only if there are also skilled services provided by an RN or PT who determine the need. I'll be needing around the clock help for the first few days or weeks. My son and his wife are planning to help for a day or 2.
Pat

Becky, Volunteer Mentor | @becsbuddy | Jul 13, 2019

In reply to @leeandpat "Dear Ginger and Vicky, I am applying to the CA ALZ association for $ help with..." + (show)

@leeandpat You have so much on your plate right now, but you don’t sound stressed out at all. You probably are stressed, but good at not showing it. I wonder if you have any nursing homes in your area that offer respite care. Or maybe you could hire several of the night staff and several day staff. Many of the nurses’ aides where I have worked were always happy to take on extra shifts. Or a local hospital? Look in a 20 mile radius. Get a friend to come over and do some major brainstorming and phone calling with you. Call the Agency on Aging, senior centers (have resource persons), hospitals, nursing homes. Look up geriatric care managers, geriatric social workers, etc. Think to the towns, cities around you. Maybe there is a nursing student home for the summer. Gosh, I wish I could help with phone calls. I think I’ve just convinced myself that I should do this in my area! I wish you successful brainstorming!

kimspr3 | @kimspr3 | Jul 13, 2019

In reply to @evett "The Jewish tradition is a living will, my brother did this with my mother and father...." + (show)

@evett

The Jewish tradition is a living will, my brother did this with my mother and father. Even though I truly cherish the CD of them, there are questions, I never thought to ask. A friend posted this on face book today. With due respect, the last moans and groans of a wealthy Atheist...
"The world's six best doctors"
Steve Jobs Died a billionaire at age 56. This is his final essay:
I reached the pinnacle of success in the business world. In some others' eyes, my life is the epitome of success. However, aside from work, I have little joy. In the end, my wealth is only a fact of life that I am accustomed to. At this moment, lying on my bed and recalling my life, I realize that all the recognition and wealth that I took so much pride in have paled and become meaningless in the face of my death.
You can employ someone to drive the car for you, make money for you but you cannot have someone bear your sickness for you. Material things lost can be found or replaced. But there is one thing that can never be found when it's lost - Life. Whichever stage in life you are in right now, with time, you will face the day when the curtain comes down.
Treasure love for your family, love for your spouse, love for your friends. Treat yourself well and cherish others. As we grow older, and hopefully wiser, we realize that a $300 or a $30 watch both tell the same time. You will realize that your true inner happiness does not come from the material things of this world. Whether you fly first class or economy, if the plane goes down - you go down with it.
Therefore, I hope you realize, when you have mates, buddies and old friends, brothers and sisters, who you chat with, laugh with, talk with, have sing songs with, talk about north-south-east-west or heaven and earth, that is true happiness! Don't educate your children to be rich. Educate them to be happy. So when they grow up they will know the value of things and not the price. Eat your food as your medicine, otherwise you have to eat medicine as your food.
The One who loves you will never leave you for another because, even if there are 100 reasons to give up, he or she will find a reason to hold on. There is a big difference between a human being and being human. Only a few really understand it. You are loved when you are born. You will be loved when you die. In between, you have to manage!
The six best doctors in the world are sunlight, rest, exercise, diet, self-confidence and friends. Maintain them in all stages and enjoy a healthy life.

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Hi Scott, Always admire how well you express yourself. I have a question, You wrote, In he Jewish Tradition there is a Living Will? Can you tell me what that pertained too? I could not find who you were responding too? Wishing you a good evening!

leeandpat | @leeandpat | Jul 13, 2019

We live in a fairly small resort town in the mts. with only a SNF at the hospital and no day care centers. The nearest big city is about 30 miles away. We do have lots of Caregiving Agencies available as a last resort. My husband is still physically in good health, rides his bike and skiied until last winter, but can't follow simple directions, answer the phone, etc, so he can't be much physical help as he needs supervision-min. assist with most of this ADL's. I'm sure it will all work out but it's taking lots of planning and coodination. Thankfully, I'm a retired physical therapist so this isn't totally new to me. I'm just used to being on the other end of this issue of home care, and on the east coast, not CA.

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