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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@becsbuddy

@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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Here's the website that @becsbuddy mentioned above:
> Aging Life Care Association https://www.aginglifecare.org/

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@IndianaScott

Thank 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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yes we talked again today about the bingo and the movies so i guess we will start that in the near future. my aunt her her foot today so now more extra time with her and care for her by me and mom. she refuses to go get it checked so just makes it for extra work for us to care for her 100% now. but maybe me and moms little ventures will help at least her and i. YES I love the mountains and thats where i belong and where my heart and peace are. im sure i will end up there one day. my sister lives about 1 1/2 hours form boone N C ring on the edge of the smokies. its funny how they ring peace in your souls to be up in the mountains. well have a great evening and sleep well deb

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@gingerw

@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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well mom and i have decided to try and go to bingo and to see a few movies so i guess we will start doing both soon so maybe we can still make some fun memories. my aunt hurt her foot today and now is bed bound so just extra work for me and mom so hopefully she heals quick as she refused to go get it checked so we are icing it for the for few days and keeping it elevated so as soon as she is back on her feet me and mom will venture out. we love to fish but not sure mom can fish anymore but im thinking of mentioning it to her she always LOVED to fish. i got all the fishing poles out today and cleaned out the tackle box we just have to get licenses. so maybe some fun in the near future.

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@debiobrien

yes we talked again today about the bingo and the movies so i guess we will start that in the near future. my aunt her her foot today so now more extra time with her and care for her by me and mom. she refuses to go get it checked so just makes it for extra work for us to care for her 100% now. but maybe me and moms little ventures will help at least her and i. YES I love the mountains and thats where i belong and where my heart and peace are. im sure i will end up there one day. my sister lives about 1 1/2 hours form boone N C ring on the edge of the smokies. its funny how they ring peace in your souls to be up in the mountains. well have a great evening and sleep well deb

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Thank you @debiobrien I am so grateful to read you are going to try an outing! Nice work!
I hope all goes OK with your aunt's foot. I know my wife's feet were a constant source of pain and discomfort. The pain was only relieved when she started on gabapantin (sp?).

I have only driven through Boone a couple of times some years ago but remember it as a lovely area! No wonder you love it so!

I shall sleep well tonight. Just fought the mosquitoes in the dusk light for a short walk in the wood with my pup and our daughter's who I am 'baby sitting' for a couple of weeks. They were very active today so they kept me hopping and that combined with a gentle rain and cooler temps should make for good sleeping!

Cheers to you and I wish you a good night as well!

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@becsbuddy

@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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I will check out the program you mentioned. NO they never want to be in a home unless that ws the last resort. my mom is doing well and walks a mile every morning then works in her gardens for a couple house and rides a stationary bike after that. but then shes done for the day. its my aunt who is really failing. she has been ill for years and had a triple by pass at 89 and never really recovered from that. my aunt is like she over 100 years old she can barely walk and get around. one day we might have to put her in a home but thats up to her kids but i will never put my mom in a home i will move in with her if she no longer can take care of herself. i always promised i would never do that to her. but my moms is actually in much better health than me lol.

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@debiobrien

well mom and i have decided to try and go to bingo and to see a few movies so i guess we will start doing both soon so maybe we can still make some fun memories. my aunt hurt her foot today and now is bed bound so just extra work for me and mom so hopefully she heals quick as she refused to go get it checked so we are icing it for the for few days and keeping it elevated so as soon as she is back on her feet me and mom will venture out. we love to fish but not sure mom can fish anymore but im thinking of mentioning it to her she always LOVED to fish. i got all the fishing poles out today and cleaned out the tackle box we just have to get licenses. so maybe some fun in the near future.

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@definition Even if your mom can't fish anymore, take her! She'll relish the trip outdoors and you both will have a good memory! I hope your aunt's foot is better real soon.
Ginger

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@gingerw

@definition Even if your mom can't fish anymore, take her! She'll relish the trip outdoors and you both will have a good memory! I hope your aunt's foot is better real soon.
Ginger

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Good morning @debiobrien I like the idea of fishing with your mom, but I would add a word of caution, which is do it only if you are positive she would be safe in that environment. I know slip and falls can be very tough on someone in the 90s and I would imagine fishing might provide wet, slippery, water-filled environments, which could offer some hazards to someone of an advanced age. I know that it does for me and I have a couple decades to go before I'm in the 90s 🙂 That said I am envisioning fishing from a boat or shoreline and you may be thinking a nice, safe dock or pier!

Also I might venture to say something less physically demanding like your ideas of a movie or bingo might be good for a first outing. Less stress on your mom, less taxing on you, and a greater chance for initial success -- meaning fun for your mom.

As I say...just my two cents plain.

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@gingerw

@definition Even if your mom can't fish anymore, take her! She'll relish the trip outdoors and you both will have a good memory! I hope your aunt's foot is better real soon.
Ginger

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oh i talked to her last night and shes ready to throw that line in and catch her some fish,. i have to be careful of where i take her and the time of day and the heat in florida and be in the shade as the heat is hard on her and me. so maybe some early morning fishing is on the agenda... i will work on getting the licenses this week. thanks for the encouragement it has helped. i appreciate it.

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@IndianaScott

Good morning @debiobrien I like the idea of fishing with your mom, but I would add a word of caution, which is do it only if you are positive she would be safe in that environment. I know slip and falls can be very tough on someone in the 90s and I would imagine fishing might provide wet, slippery, water-filled environments, which could offer some hazards to someone of an advanced age. I know that it does for me and I have a couple decades to go before I'm in the 90s 🙂 That said I am envisioning fishing from a boat or shoreline and you may be thinking a nice, safe dock or pier!

Also I might venture to say something less physically demanding like your ideas of a movie or bingo might be good for a first outing. Less stress on your mom, less taxing on you, and a greater chance for initial success -- meaning fun for your mom.

As I say...just my two cents plain.

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yes we like the shoreline and piers and actually she is very physically fit as she walks 1 to 2 miles every morning and works in her gardens for 2 hours a few times a week and rids a stationary bike about 5 miles a day. lol but yes we will be safe and shes more excite to go fishing than any of the other things as she prefers to be more active then sitting around. most of her friends find it hard to believe she is 92. but we will see how it goes and i will work on finding a nice shady flat ground place we can try the first fishing trip and in 30 min if it is to much for her we will stop. but shes an outdoors lady. hates being inside.

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@debiobrien

yes we like the shoreline and piers and actually she is very physically fit as she walks 1 to 2 miles every morning and works in her gardens for 2 hours a few times a week and rids a stationary bike about 5 miles a day. lol but yes we will be safe and shes more excite to go fishing than any of the other things as she prefers to be more active then sitting around. most of her friends find it hard to believe she is 92. but we will see how it goes and i will work on finding a nice shady flat ground place we can try the first fishing trip and in 30 min if it is to much for her we will stop. but shes an outdoors lady. hates being inside.

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@debiobrien I know I don't need to remind you. But you know me just speak from my heart. Make sure that when you do take her fishing, that you have told more than one person where/what time you are going and how long you'll be. Make sure you have a phone with you that can get reception where you'll be. If something happens, you know that the rescuer in you would never forgive yourself if you couldn't communicate with someone. I'm glad that your mom is ready to get out there. Like you said, early in the morning would be nice because the fish probably will be a little bit closer to the surface before the heat comes, if my memory serves me correctly from my fishing days.
Ginger

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