[JD]

TC. JD

[JoJo6]

How are things going with you? I have thought of you and still marvel at the things you do.
Being a caregiver is about the hardest job I have ever had It has to be for you with your own problems. How is YOUR health? Sometimes we forget we are human , especially when our patient isn't doing well.

My own health problems have worsened and I am going to have to go to a Urologist (sp?) to try finding out if I have a problem with my kidney's. I surely hope not. things are bad enough already. They did find something when I had the last MRI.

I've been wondered if you could get several people to come in on different days so you can get out, have some free time. That would be great for you.

Well, I have had all of you on my mind and I wanted to check on all of you. I hope things are improving but doubt they are. One step at a time, but sometimes that 1 step won't even behave.

MIL isn't doing to good. NH called early Sunday morning, said she was sitting in the floor, now this was 5:00 a.m. The 2nd shift nurse told us she was crawling down the hall on hands and knee's. They didn't know, they just didn't want to tell hubbie. He was not happy at all and is still trying to find out what really did happen. As best as we could tell it didn;t appear she was hurt, but she had a very strange bruise on one of her hands. This was already there when she fell or sat down in the floor. It is very sad, She didn't want to turn my hand loose, Now she hardly says a word anymore, but she has begun to mumble a lot. Well I heard her plain as day when she asked me if I would be sure to come back,.

When we have to start being the parent and them the child, it breaks my heart. I had to do this with my own mom. She had brain cancer. I do thank God she was lucid until almost the end. Only new it about 7 months before she died. They did needless brain surgery. Maybe that helped her stay her loving self. I am so sad today. It does get to us at times.

Take care all, Jo

[tamiloo]

My husband and I have been married 5 years. He was diagnosed with Multiple Sclerosis almost 20 years ago. He is 51 and I 52. I have read your posting was wondering if anything I would say might have meaning for someone.

I was born with spina bifida. I am very fortunate and blessed that I can walk. I have only the bone formation. I do live everyday with great pain, but am able to care for myself and my family. My first husband was also very angry at my disability. I called him my fair weather friend. He loved being with me as long as I didn’t appear to be in pain. If he were to find out that I was in pain then he would leave. For 22 years I had to try and deny my body the knowledge that I loved it and that it indeed was in pain. This was very hard on me and my self-esteem. I had no love for myself.

The man I am married to now loves me and takes care of me. He is always aware of my pain and helps me through it. He will at times get into his wheel chair and get me a pain killer because he loves me. We take care of each other. I do everything in my power to make everyday his best day so far. Sometimes that means just going for a drive together or watching a sunset together or watching the news together. We know how much we mean to each other and that when we took those vows that said through sickness and health....the good the bad and the ugly...we do our best to keep them. Yes, we both get frustrated with our bodies and our restrictions, but we never get mad at the other person because of the great blessing to serve each other. Yes, I do get angry once in a while for the things that I won’t be able to experience with him because of his disability. I could list them all but the list would be too long.

I will also admit that I am thankful to a God who created us the way he did with differences. When it all becomes more than we can endure, then is when we give it to Him...he has promised us that he will pick up on the loose ends for us...through grace....remember, he didn't say it would be easy...he did say that it would be worth it!

[hannahbanana]

Tammy,

You have an amazing attitude and a world of experience to share, both good AND bad and from both care-provider and care-receiver.

I am so glad that you shared it here for others to read and hopefully it will inspire others too.

You inspired me. Thank you.

[JoJo6]

Hi Tammy. it is good to see you Yes, you have an amazingly good attitude.
In keeping with your train of thought, helping others, may I add a little to your kindness.

You say God will help us, just lay those burdens down right at his feet and trust him. yes, & IMHO he doesn't mean for us to pick those heart aches and troubles back up.

That is the part I need to work on, when I lay things at the Lords feet ((or whom ever your highpower is)) I turn right around and pick them up again!

Yes indeed, I have to work on that one. I'm glad you are hear, I think you will enjoy this forum very much my love, Jo6

[mrsQ]

Hi I am Karen. I am 29...30 is coming like train at me . I was born with a couple of spinal deformaties that were not found till I was in my 20's. I was dx with scolosis as a kid but it went untreated, long story. So now I have 2 curves that are pretty advanced ribs on tops of each other and such, the 2 non fusions in my spine, DDD, spondalosis....not spelled right, and SI joint dysfunction. The last six months I have really lost the ability to do basic stuff and walking has become something I do in short bursts. I am grateful I can still walk at all don't get me wrong they told me I would be in a wheelchair by 20. But even though I knew it was coming I am not handling it well.

My husband Q has a SCI, paraplegic for 17 years. We have been married 6 years. He is very independent except when he has a pressure sore then I have to wait on him till he is allowed back in his chair. I do his bandage changes between home health visit also. If I was able I would go back to school to be a wound care nurse. 2004 he spend 8 months in an air bed with a wound vac..not fun. But when he is healthy he is able to help around the house and spends way to much time out in his work shed. We both use to work in the mental health field but our health problems ended that three years ago.

The first of 2005 my MIL started having hallucinations which lead to a dx of Alzhimers. She has lived with us almost 2 years. She is going down really fast here lately. She still knows us most of the time but falls a lot which has really done a number on my back even having a hoyer lift. The last month I have had someone coming in 3 days a week to give her a shower and give me a break.

That is pretty much it I guess. We have no kids, were foster parents to a teenager for about 3years when we first married. I want a family so bad I honestly have been fighting depression for the last year due to a failed international adoption. I can't have kids due to having PCOS, shouldn't even have tried with my back but ya know.
Glad to find this board.

[Boopers]

Hello,

It sounds like there are alot of us who are caregivers or who have been caregivers.
I took care of my FIL until he passed several years ago with liver failure and I took care of my Mother until she passed with pancreatic cancer almost five years ago.
I never regretted one moment of taking care of them. I think it is something that I felt honored to do. Especially, when I held each of their hands when they passed.
I miss them terribly.
I want to say that you all are angels on this earth and I am very proud of all of you.
Just don't forget to take care of yourselves in the process.
Take care,
Linda