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Old 12-04-2012, 08:53 PM   #1
hereyago
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fellow caregivers: have you felt this way when level of care has to change?

Ok, my mom79 came home today after surgery,c diff. She has been out of the house since August between hospital stays and rehab. She is now having to be in a wheelchair and before she was able to dress herself,use her walker, make herself a sandwich (she never cooked so I did that). So the past few months have taken a tolll on her. She weighs 72 lbs and has a skin ulcer, to you can see her bone(which I learned to take care of today). She doesn't want hospice just home health which the nurse will be out tomorrow. But when or if the level of care that you have had to adapt to,did you freak out and think you can't do it? I did have a small freak out alone and now I am better.but it breaks my heart that we now have a new normal for whatever time left. I feel bad or more like helpless that I can't make things better. Any advice? Tia and thanks for reading
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Old 12-04-2012, 08:58 PM   #2
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It's a difficult adjustment so feeling overwhelmed is normal. If I may ask, why not hospice? If it's been recommended, I'd try to get your mom to go along with the suggestion. The level of care is greater and the hospice nurses are wonderful.
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Old 12-04-2012, 09:00 PM   #3
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YES!!! My DH is disabled and this week is having an amputation. Every time he needs new care I worry I'm not up to the task and will unwittingly hurt him more. I am physically sick at the thought of caring for the amputation site, as they will be sending him home at the first sign of healing. We have home care come in twice a week but twice a week ain't enough - I'm caring for the site requiring amputation three times a day, and helping him dress and driving him everywhere already. I've actually just today taken a leave of absence from work to deal with this latest crisis. My confidence is really shaken this time around.
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Old 12-04-2012, 09:18 PM   #4
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Specialk: she is in denail about her prognosis. My mom has been foolisly lucky through the years by tempting death. Even a couple months ago they were telling she may die in surgery or a few days after.her surgeon even told her he was surpised she was still here.then a month later once again being told she may die that night didn't happen she pulled through. Her living in denial is nothing new. She is capable if still making her own decisions even not wanting a hospital bed because she has been in one for past few months.
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Old 12-04-2012, 09:27 PM   #5
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That makes it so much more difficult for you and I completely understand. By the time my dad was in hospice, he wasn't aware enough to fight it. We just told him they were visiting nurses. I didn't realize your mom was still capable of making her own decisions. Good luck to you.
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Old 12-04-2012, 09:38 PM   #6
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Specialk: sorry about your df and thanks for the good luck wishes. Sandynd: I am so sorry ! I feel kind of dumb after reading your post, as in your situation is worse then mine. But glad I a not alone. My df had hospice for 1 day then had to go back into hospital and passed away a few days later. I promised him I would take care of my mom,so I think I can be rough on myself. But I just have to get used to the new normal. Caregiving isn't for the weak is it? Good luck to your husband and yourself.
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Old 12-04-2012, 09:56 PM   #7
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Quote:
Originally Posted by hereyago
My df had hospice for 1 day then had to go back into hospital and passed away a few days later. I promised him I would take care of my mom,so I think I can be rough on myself.
Taking care of your mom means seeing that her needs are met. It doesn't necessarily mean you have to do everything yourself.
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Old 12-04-2012, 09:59 PM   #8
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OP, I think what you're going through is very common among caregivers. It's very hard to have your life changed for you and most of us feel resentful of the changes (if we're being honest with ourselves.) We can love our parent, spouse or child to pieces, but caregiving is still a huge energy drainer.

I know my situation isn't the same, but I was the main caregiver for my severely mentally handicpped/autistic son for 17 years, until I simpliy couldn't do it any more. During those years, DH became fully disabled with heart/lung disease, so he needs more help and caregiving too. As I got older and developed my own chronic conditions(very common among caregivers to develop chronic illnesses), I just couldnt' do a good job anymore. Something had to give...so we researched our options and made the best decision we could.

OP, my heart goes out to you. I know this has to be hard, not only the physical work but just seeing your mom go downhill like this.It's not a contest and everyone needs to deal with in the best way they can. Don't be afraid to come here and vent, any time you need to.
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Old 12-04-2012, 10:13 PM   #9
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Pea-N-Me: thank you for your post. Our GSD,delgado had a fit seeing mom today. He kept going in her room lol. Minkydog: not to be weird but I thought about you today wit me trying to work the wheelchair and trying to transfer her from a chair or bed to the wheelchair and thinking about you having to do that for Christian. My back was killing me.
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Old 12-04-2012, 10:40 PM   #10
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Quote:
Originally Posted by Pea-n-Me View Post
Taking care of your mom means seeing that her needs are met. It doesn't necessarily mean you have to do everything yourself.
I agree 100%.
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Old 12-04-2012, 11:07 PM   #11
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If you and your mom learned more about what hospice really is, you might both change your minds about getting that extra help for her. It makes a big difference in quality of life. For my mom it meant more nurse visits, more aide time, and a chaplain who came to sing to her and pray with her. It's as little as desired or as much as the system allows. Hospice is about giving comfort to the ill person. It doesn't mean anyone has given up. Having had hospice for mom, I am an advocate for it now.

The mattress and bed that was provided for my mom also did not look like a hospital bed, but made a big difference in her quality of life. The mattress prevented pressure sores and the height of the bed was adjustable for caregiving ease, as well as the head and foot of the bed adjustable for her comfort.
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Old 12-05-2012, 04:44 AM   #12
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Hospice doesn't mean she has to kick the bucket within 6 months or else they stop. They will determine the potential time your mom has left, and if after 6 months, reevaluate the situation. Your mom can fight for as long as she wants.

Most often hospice is sought out too late, but it could be a huge lifesaver to the caregiver. You should have a heart to heart about what your needs are too.
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Old 12-05-2012, 04:51 AM   #13
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Quote:
Originally Posted by sandynd View Post
YES!!! My DH is disabled and this week is having an amputation. Every time he needs new care I worry I'm not up to the task and will unwittingly hurt him more. I am physically sick at the thought of caring for the amputation site, as they will be sending him home at the first sign of healing. We have home care come in twice a week but twice a week ain't enough - I'm caring for the site requiring amputation three times a day, and helping him dress and driving him everywhere already. I've actually just today taken a leave of absence from work to deal with this latest crisis. My confidence is really shaken this time around.
good luck
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Old 12-05-2012, 06:26 AM   #14
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Originally Posted by hereyago View Post
Ok, my mom79 came home today after surgery,c diff. She has been out of the house since August between hospital stays and rehab. She is now having to be in a wheelchair and before she was able to dress herself,use her walker, make herself a sandwich (she never cooked so I did that). So the past few months have taken a tolll on her. She weighs 72 lbs and has a skin ulcer, to you can see her bone(which I learned to take care of today). She doesn't want hospice just home health which the nurse will be out tomorrow. But when or if the level of care that you have had to adapt to,did you freak out and think you can't do it? I did have a small freak out alone and now I am better.but it breaks my heart that we now have a new normal for whatever time left. I feel bad or more like helpless that I can't make things better. Any advice? Tia and thanks for reading
Convince her to do hospice. Insist on it.

My sister in hindsight now wishes she would have did hospice for her MIL sooner. It was wonderful.

I watched as many burdens were lifted from my sister and BIL. It was such a relief to them. Most of the hospice nurses were absolutely great.

In addition my sister got counseling, music therapy for her MIL, and other stuff that is offered. Hospice truly is wonderful.

Many hugs....
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Old 12-05-2012, 12:08 PM   #15
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Quote:
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Pea-N-Me: thank you for your post. Our GSD,delgado had a fit seeing mom today. He kept going in her room lol.
Aww, that must have been sweet. Glad they both got to see eachother again.

I would get hospice in as well.

You have GOT to make sure she gets pressure of that area of the skin ulcer, meaning she has to either reposition herself or be repositioned frequently. She probably favors that side if she got an ulcer there. (If it gets worse, it could be her undoing.) Also be sure she doesn't get any new ones. Use lots of pillows and wedges if necessary to get her off her backside and bony prominences. It's challenging to do, round the clock, especially when someone doesn't want to cooperate, and also if there's either incontinence or something like a diaper involved, since those compromise the skin integrity even further. You need help with this. Skin is the largest organ of the body, and if it's open, there's a nice pathway for germs to get into the body, then bloodstream, and when the body's already run down, as hers is, there's nothing left to fight it and it can take over. So it's a huge issue.

There are so many other body systems to care for as well, each one being equally as important. It's a lot for you to take on. Get the most help you can.
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