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APPLESHAPELY's Photo APPLESHAPELY SparkPoints: (4,234)
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7/2/17 10:34 P

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Hi Laurance! I'm sorry for the late reply. Just today, I was telling someone exactly how much of a toll caregiving can be emotionally. For me, I handled the physical (being tired, lifting, etc) part well, but years of caregiving have left me spent. But I'm trying to regain it back, and I hope I can continue exercising so I can at least lose a little weight!

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LAURANCE's Photo LAURANCE Posts: 6,127
6/20/17 7:37 A

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I agree that many people sure don't understand. It's the people who have gone through it themselves who do get it and know how much it takes out of us.

That's why I am on this Team.

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APPLESHAPELY's Photo APPLESHAPELY SparkPoints: (4,234)
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6/8/17 1:37 P

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I am one of those caregivers that doesn't have a lot of free time. I can relate to you all, and I hope that I can post more often. I don't really have anyone that truly understands what we go through, and that's been part of my frustration. Friends (the few I have), try to relate but really can't. I hope that we, as caregivers, remember to take a breath and take things day by day (as hard as that can be). Hugs to all!

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MICHELE142's Photo MICHELE142 Posts: 16,702
5/15/17 2:44 P

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From what you have posted, your definitely not alone in what you are experiencing. This team has or is now going through the same possessive husband nature. Actually along the medical front Hospital Patients, females are harder patients to care for than the male patients.

With my husband, he did not want another female caring for him unless he was getting physical therapy and than the therapist had to have years of experience. In 1998 DH began started being diagnosed with conditions that would require nursing care at home. At that time I could balance Working and Caring for him perhaps 6 weeks at the most. Then in 2012 when he fractured his hip, the time was for 4 months, then in 2013 for a fractured femur, that care was four 5 months. The biggie was 2013 with the diagnosis of Lung Cancer. He was well aware after my heart attack that I would need help in caring for him. It took my doctor, talking to his doctor to get DH to except Home Care for him. He thought and always told his doctor that his wife could handle his care. " She's an RN and she knows what to do! " Finally though he said Ok to other nurses caring for him.

DH passed away on the 16th of August of 2015.

Presently the lack of activity may be due to Loved ones requiring more care, in the hospital,
Caregiver's having problems, etc. We're here! I'm feeling much better so, back and ready!

Michele emoticon

Michele - Central Ohio


Warriors In Pink~~Administrator
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" Finish each day and be done with it. You have done what you could."
~Ralph Waldo Emerson



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LOIS_1950's Photo LOIS_1950 Posts: 5,730
5/11/17 9:46 A

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Hello.....recently found this team. I am caregiver for DH of 45 years. Came down late in life with MS 17 years ago. I feel like the "caregiver role" never leaves me emoticon .....we have two daughters and a "late in life" son. When DS turned 10 that is when DH got dx'd. We moved out of FL to SC to live closer to DH parents and our oldest DD. About 10 years ago I was juggling the caregiver role among both parents & DH.....whew! Exhausting!!! Thankfully, the MS has not affected my DH memory......just his body. He's a type A personality and likes to "micro manage" my every more. He can still transfer himself altho he is fully w/c bound. Now, on top of the MS he is diabetic! And, won't do the steps necessary to curb the ill affects.....ie; exercising, eating healthier

Lately though, I am feeling drained.....physically, emotionally, mentally.......feeling angry inside which I can not seem to shake. Feeling like a "prisoner". Have no friends locally even though we have lived here nearly 20 years....how sad is that!!?? In order to be a friend you need to nurture your friendships. I don't have the time to spend away from DH to do that. We live on a 1/2 mile circle street and once I get DH situated at the table with the computer I can go for my many (save my sanity) walks I take.....within that 1/2 mile circle. If he gets into trouble....which has happened I have to be able to bee line it back to the house quickly.
He refuses to allow anyone outside of me to care for him. I must hear my name called hundreds of times a day for help in him doing something....dropping something....getting him something. My only escape is reading or limited time on computer or walking.

Right now I am feeling frustrated more than usual because my sister in Colorado is turning 70 in July and my other sister wants us to fly out to surprise her. I want to do it so badly but, DH wanted nothing to do with that idea. Just once I would like for him to say "I think that would be a good idea for you to take a break to re-charge yourself". But, NO....he doesn't think like that. Sorry for the rant.....the more I think about it the angrier I get. Best to push it back in my mind and forget about it.

This is my only safe haven spot to speak my true feelings.....I discovered DH reads my emails I send and receive!! emoticon emoticon

Lois
from GA - EST

2016 Spring & Summer 5% challenge - Goal Met!
2016 Fall 5% challenge - Firecracker 4.33% of my goal
2017 Winter 5% challenge - Firecracker ML 2.41% of my goal (illness)
2017 Spring & Summer 5% challenge - maintained
2017 Fall & Winter 5% challenge - Awesome A's - maintained
2019 Summer 5% challenge



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MICHELE142's Photo MICHELE142 Posts: 16,702
3/22/16 7:33 P

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Finely moved and no, doesn't look like all care-giving is over. At least there will be times that will offer something to do that I'm not new around. I have not farmed since I was a teenager, when things were not always run by machines and computers. Always looking for new horizons.

Have you heard from Pixie? Michele

Michele - Central Ohio


Warriors In Pink~~Administrator
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" Finish each day and be done with it. You have done what you could."
~Ralph Waldo Emerson



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LAURANCE's Photo LAURANCE Posts: 6,127
3/19/16 9:13 P

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Hello, Alrae...wow, that's a sad thing to hear! To go on a holiday to have a happy time and be in an accident that ruins both of your lives! Yes, I can sure believe that you have your hands full!

I'm caring for my Sweetie. He has early dementia and can't manage his medicine, can't drive, forgets what doctor we're seeing, forgets what day it is. Lots of stuff. He's diabetic, has heart failure which leads to edema, and he has wounds on his ankles and legs that don't heal. He becomes weaker and weaker as time passes. A good part of that is due to his unwillingness to do what his doctors have said, that he needs to walk and move and get some exercise. The more he lies around in front of the TV, the weaker he gets.

He has chronic pain problems, and problems with medication. He's been on opiates since 1993, which is too much too long, and now the medicine is adding to his pain. I've been weaning him off opiates, and we're seeing the Pain Clinic to find alternative pain killers.

I haven't seen my friends in three years. Right now I can't leave him all day because he can't manage medicine. But once he's off the opiates I can give him his morning medicine, see my friends, and be back in the evening in time to give him his evening medicine. My daughter and son-in-law could maybe just check in a couple times during the day. Maybe. Maybe. But I don't want to get too hopeful.

I've met you on other forums here. When I said that it's quiet and where is everybody? what I was talking about is the "2015...let's chat" forum. That was a busy and lively forum, and I learned some interesting things and had lots of good conversations. But what has happened is that the three liveliest women became widows within the space of a few months. Being no longer caregivers it became time for them to move on and start new lives. And there had been another lively woman whose husband died, and a mother whose ailing daughter died.

So right now I'm sitting around on that forum hoping that some new people will show up there. I expect to be caregiving for a long time. I don't see light at the end of the tunnel.

I'd be delighted to converse with you. And maybe some more people will show up and we can get some talk happening.
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ALRAET's Photo ALRAET Posts: 374
3/19/16 9:43 A

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Hi my name is Alrae T for those who have not met me yet. I am a 24/7 care giver for my spouse, Denis, who had a traumatic brain injury while on vacation in Belize. He was struck in the head and left leg by a boats propeller. This left him with paralysis on his right side. He spent a total of 8 months in various hospitals before I brought him home. It has been 8 years now. Denis has deteriorated in the last year he is weaker and because the brain injury affected his speech (aphasis) he has hard time communicating. I understand him but it must be so frustrating for him. He understands everything and he has all his memories and recognizes everyone. He is still the gentle soul he always was. he can feed himself with his left hand but is totally dependent otherwise.
I am wondering about the other's in this group. Who do you care for? What is your story? Is anyone struggling ? Believe you me that I have gone through a lot and am still dealing with issues that are hard like Denis and I finally signing DNR (Do-Not-Resuscitate) forms.This has been a fairly quiet team and since I am fairly new I would like to learn more about it's members. God bless and thanks for being here for support. Alrae

Remind yourself that it is okay not to be perfect.


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