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  #1  
Old May 06, 2017, 10:18 PM
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Rose76 Rose76 is offline
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I frequently get depressed and come out of it. This time a year ago I was doing so much better. I do well for weeks, even a few months at a time. Now I can't sustain being okay. I've lost track of how many times today I've broken down crying. I don't let my S/O even see me like that. He's very unwell and getting worse. He's just started to not beable to walk from one room to another. I put him in the wheelchair at times now. I know he's only going to continue deteriorating. I've been caring for him for over 3 years almost full time. Lately, I'm just falling apart inside. I'm starting to wish I was dying too.
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  #2  
Old May 06, 2017, 11:16 PM
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Hobbit House Hobbit House is offline
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Sorry you are so down. I can relate. I think your feelings are validated. This is something everyone must go through at some point in life. That doesn't make it easy. I'm going through something similar. Be well.
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  #3  
Old May 07, 2017, 01:38 AM
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subtle lights subtle lights is offline
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(((hugs))) for both of you.
I cannot imagine how difficult this must be.

It's very understandable you feel like this, Rose
I hope you have people who support you in this, IRL.
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  #4  
Old May 07, 2017, 02:09 AM
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I'm really sorry.. it's hard when you struggle, it's even harder when you try to hide it.. I think a lot of people can relate..
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  #5  
Old May 07, 2017, 02:28 AM
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Both my family and his are on the other side of the country. I have a sister who I can call and who shows a real interest in me. She's far away, but I know she thinks of me. My bf hasn't seen his children in 3 years. They call him, but they don't ask to talk to me. I don't have many friends. The ones I have, I don't do much with anymore. It's hard to get away.

I took on this caregiving role voluntarily. I was getting a lot of satisfaction from it. Lately, I have no interest in anything. I go to bed some nights leaving the kitchen a mess. Then I have to face it in the morning. I let my mail pile up without answering it or paying bills. I keep him showered, but seem to care little for sprucing myself up. It's just classic depression. And I get irritable with him.
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  #6  
Old May 07, 2017, 03:01 AM
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MickeyCheeky MickeyCheeky is offline
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I'm sorry, Rose..
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  #7  
Old May 07, 2017, 08:52 AM
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Sunflower123 Sunflower123 is offline
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Quote:
Originally Posted by Rose76 View Post
I frequently get depressed and come out of it. This time a year ago I was doing so much better. I do well for weeks, even a few months at a time. Now I can't sustain being okay. I've lost track of how many times today I've broken down crying. I don't let my S/O even see me like that. He's very unwell and getting worse. He's just started to not beable to walk from one room to another. I put him in the wheelchair at times now. I know he's only going to continue deteriorating. I've been caring for him for over 3 years almost full time. Lately, I'm just falling apart inside. I'm starting to wish I was dying too.
Are you getting help from a pdoc and a therapist? You know how they say you have to put the oxygen mask on first in the airplane? You need to be gentle with yourself and take good care of you so you'll be able to take care of him. I am so, so sorry you're going through it. It sounds heartbreaking. You are not alone. You have a lot of support on this forum. Thinking of you....

Thanks for this!
Rose76
  #8  
Old May 07, 2017, 10:06 AM
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Rose76 Rose76 is offline
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no I don't have a pdoc or therapist. I don't need to talk to a therapist. I need a break from what I'm doing.
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  #9  
Old May 07, 2017, 10:35 AM
*Laurie* *Laurie* is offline
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Hi Rose, I'm so sorry that life is looking bleak right now. A support group for caregivers might just be really helpful for you.
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  #10  
Old May 07, 2017, 10:40 AM
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winter4me winter4me is offline
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no I don't have a pdoc or therapist. I don't need to talk to a therapist. I need a break from what I'm doing.
I cared for my mother for a number of years....it is difficult...more than you know till it is over...
Do see if there is an adult medical day care available---I found the one I used invaluable. Talk to his care provider re: having some in home help through an agency...you need some time for yourself, even if it is just a few hours or a day or two a week.
((((hug)))))
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  #11  
Old May 07, 2017, 11:19 AM
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The VA said they would pay for him to go to elder day care. I have never been to one of these places and can't imagine what it's like. He needs incontinence care every three hours. He frail, weak and tires easily. At a daycare, I don't imagine they have beds. Plus, I think he woukd miss his TV. But I shoukd visit a daycare to see what it's like.

He has some home attendant service. These home attendants aren't nurses' aids. They;re not experienced in hands on care.

Last year, he was in a nursing home for 3 months. He feel there a number of times. He developed a pressure sore. No falks or sores, since I've been caring for him at home.

I'm sick this morning. He's watching TV, while I lie in bed. I'm waiting for some pain pills to kick in. I feel less depressed this morning, but it keeps coming back. So I don't expect to have much of a day.
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  #12  
Old May 08, 2017, 12:01 AM
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I know you love him Rose, so of course it is extremely hard to let go and let someone else take on the role of caregiver. I understand you know that the best care comes from someone who loves him (you), but eventually you wont be able to help him anymore if you allow yourself to bend so far for him. Sure, trees bend in the wind but this has become a storm and you need shelter yourself. Please try to put your own needs ahead of his. I understand it gives you purpose. You are worth more, you have much to offer this world, other than only this one role you are playing as his long time partner.
It is not selfish to think of yourself. You know that you need to get away but you are afraid it wont be good enough care. Please realize that you have and continue to do the best you can, but you MUST put yourself higher up... you cant be everything to one person, no one can. Allow others to do what they can. I had to let others care for my mom even when I knew what would have been better for her , take care my friend
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  #13  
Old May 08, 2017, 12:59 AM
avlady avlady is offline
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a doc could be a great asset and you could get some meds to take the edge off, i also am not, or wasn't a suggester of meds but in my older years now i can see they got me through some tough times.
Thanks for this!
Rose76
  #14  
Old May 14, 2017, 10:09 AM
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winter4me winter4me is offline
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Originally Posted by Rose76 View Post
The VA said they would pay for him to go to elder day care. I have never been to one of these places and can't imagine what it's like. He needs incontinence care every three hours. He frail, weak and tires easily. At a daycare, I don't imagine they have beds. Plus, I think he woukd miss his TV. But I shoukd visit a daycare to see what it's like.

He has some home attendant service. These home attendants aren't nurses' aids. They;re not experienced in hands on care.

Last year, he was in a nursing home for 3 months. He feel there a number of times. He developed a pressure sore. No falks or sores, since I've been caring for him at home.

I'm sick this morning. He's watching TV, while I lie in bed. I'm waiting for some pain pills to kick in. I feel less depressed this morning, but it keeps coming back. So I don't expect to have much of a day.
A good adult day care is a wonderful thing. The staff should be able to provide incontinence care, assistance with personal care and basic tasks appropriate to the needs of the person. (the one I used provided nail care, hair cuts if needed/wanted, incontinence care, baths/showers if needed, activities, quiet space, supervision, and transportation if needed to and from---and met individual needs---medication administration (RN/LPN) etc. And there may be monies available to help pay for the services.
I recommend visiting the place, see how it is run, talk to staff and those they care for as able. Don't be put off if he has resistance initially, I finally just took my mother one day as talking about it upset her---she adjusted well.
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Thanks for this!
Rose76
  #15  
Old May 14, 2017, 12:56 PM
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Thanks, winter. That sounds better than I would have expected.
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  #16  
Old May 14, 2017, 02:27 PM
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I have friends who are LPN'S & do in home support to give care givers a break also several days a week if needed.

I know also I have a very dear & loving friend who is a physicians assistant. She was caring for her MIL in their own home. I would come in every so often to stay with her to give tjem a break to go & do things they needed to do but as she progressively got worse (99 years old) my friend realized that her MIL needed more constant care than she could give & even started to resent having to deal with her MIL & the dementia. Realized it was better for all to have her in a quality care faciluty.

I have another friend who is now 80 & deals with parkinsons. She was living all aline on her farm & had several serious falls. No family to care for her. I visit her every Sunday & other times inbetween. I have come to care for many who are in that care faciluty & stop by to see them all.

Another lady has a very caring son who has dedicated his life to caring at home for his parents. His mom also has parkinsons & is fed through a cath IV nutrition. She has been this way for years.

The important thing is to be honest with ourselves & them to KNOW OUR OWN LUMITATIONS & to be ok with them.
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Thanks for this!
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  #17  
Old May 14, 2017, 03:18 PM
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I think I'm so determined to do what I want to believe I can do . . . and I manage the doing, so I think that proves I can. But it is becoming clearer every week that my welfare on a number of fronts is suffering. Then I think, "Well, that's the sacrifice I choose to make." But I wonder, if I'll look back years from now and say, "Yes, it was worth it."? - or - will I then think I was a fool. ?
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  #18  
Old May 14, 2017, 03:37 PM
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I can do lots of things....basically most things I set my mind to unless prysical limitstions get in the way....but usually I push those limitations until I PROVE to myself they are REAL.

The thing is that sometimes just because we CAN DO something, it's not always the WISE THING for us to do.

Even with my mom, I pushed to stay with her in spite of my injured foal that was an hour away & required daily care because I sensed something seriously was not right with the home care person situation. I pushed my stress level thatwas already on overload to the point where the trauma I experienced ended up causing PTSD because my resilliance was so low & stress always caused me a sick feeling which landed me dealing with anorexia at the point my mom died, I was in the medical hospital being treated. The price on our own physical & mental well being can be costly & we dont even realize its happening because we are so busy focusing on the person we are caring for.

The resentment & anger I ended up having to deal with after my mom died was definitely NOT easy to deal with. I am ok 12 years later but those first 6 years were not good.

I sensed what was happening which was why I found a good nursing home for my mom after her last hospitalization & told her at that point she didnt have any better options left. Sad....YES....but it was the best choice I could have made.
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Leo my soulmate will live in my heart FOREVER Nov 1, 2002 - Dec 16, 2018
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  #19  
Old May 15, 2017, 12:07 AM
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It must have been tough to make the step you made. But homecare can be very inadequate. There is a home attendant comes to my bf. I don't let her do showers. She can't cook. Mainly she's handy for errands, laundry and vacuuming . . . and she's very sweet to my guy. Soon we're going yo have some funds from the VA to pay for more help. I guess I'll see how that goes. Really capable caregivers are very hard to find, unless you're real lucky.
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  #20  
Old May 15, 2017, 03:44 PM
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What would you do with your time if he goes to the nursing home?
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  #21  
Old May 15, 2017, 04:22 PM
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He was in a nursing home for over 100 days last year. I was there almost every day for a good part of the day. (I think I missed 5 days.) I did almost all his showers, while he was there. I did most of his hands on personal care. They were not keeping him clean. I had him up walking with his walker. (They just left him in his wheelchair.) He developed a pressure sore from too much sitting in the w/c. That's completely healed now.) I changed his bed linens. (They would often just pull up the covers over stained sheets.) I brought him homemade protein shakes and other food. I kept an ice chest in his room that I stocked daily with nutritional drinks and snacks, like cheese.) I took his laundry home daily. (They were losing his clothes.) I made sure he had his dentures in for meals. (They almost never did, even though I phoned them twice to remind them.) Twice I brought him to the emergency room at the VA for acute problems they failed to notice. (One of those was for food stuck in his esophagus that required emergency endoscopy in the O.R.) He fell there 8 times.

I did enjoy being home nights, knowing he was being watched. I got my own apartment cleaned up. Mainly, I relaxed in my own home. But the running back and forth was a hassle. I took him out every weekend to have dinner at my house. I would be no less busy with him, if he were back there.

I do think about what I will do when he's gone. I would follow interests of my own. Might do some volunteer work. I could even work part-time. I could visit my family who are far away. I will miss him.

When you can't afford an expensive facility, nursing home care isn't too great. Even expensive ones aren't all that good. There is no easy solution that lets you have peace of mind.
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  #22  
Old May 16, 2017, 04:27 AM
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So true...& it is important if they areina nursing home to be there like you were. I have seen that those whose family comes to visit are the ones who get the better care. It is always important to have an advocate & going back & forth to the nursing home is also exhanusting.

As you said there is really no easy solution.
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Leo's favorite place was in the passenger seat of my truck. We went everywhere together like this.
Leo my soulmate will live in my heart FOREVER Nov 1, 2002 - Dec 16, 2018
Thanks for this!
Rose76
  #23  
Old May 16, 2017, 07:00 AM
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winter4me winter4me is offline
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Quote:
Originally Posted by Rose76 View Post
I think I'm so determined to do what I want to believe I can do . . . and I manage the doing, so I think that proves I can. But it is becoming clearer every week that my welfare on a number of fronts is suffering. Then I think, "Well, that's the sacrifice I choose to make." But I wonder, if I'll look back years from now and say, "Yes, it was worth it."? - or - will I then think I was a fool. ?
I know the feeling so well! It sounds like you really have done what you can, and that you will be able to know that at some point. Your health is Important--physical and mental. And, you want to look back and feel good about the time spent. (sometimes it helps to think "How much would I want someone to do for me once it impacted them negatively?"---(hug(
I think, without the right support, sometimes even with, there comes a time when you reach your limits and it is best for both/everyone involved to be able to "let go" of being the caregiver.
The in home services I know are not adequate as they have so many restrictions (I helped care for my neighbor's wife daily for some time because the people, even the nurses, who came from support services were limited in what they were allowed to do by Policy and Procedure of their agencies. I did some volunteer work in this area and even though I am an RN, I could not actually give the person their medication, I could make them available---needless to say taking meds incorrectly is common (in general) when someone is ill and I did a bit more than "make available"....I couldn't watch someone take the wrong dose/medication....etc....or let someone unsafe manage their own bathing when they needed help that I could offer...
Now, I work with kids and it does lighten the heart a bit....
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/ the bones of that word mend slowly...' marie harris


Thanks for this!
Rose76
  #24  
Old May 16, 2017, 10:43 AM
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eskielover eskielover is offline
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Quote:
sometimes it helps to think "How much would I want someone to do for me once it impacted them negatively?"-
I have continuously said that I would never do to my daughter what my mom did to me....your comment is so true.
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Leo's favorite place was in the passenger seat of my truck. We went everywhere together like this.
Leo my soulmate will live in my heart FOREVER Nov 1, 2002 - Dec 16, 2018
Thanks for this!
Rose76
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