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lady, you can whine to us anytime, that's what we are here for, to try and provide comfort and support. naus
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roxie, vent let all out you are not alone, we are here for you.
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Hey whining is good don't apologize, bootscootin is good a little glass of wine (whine) is good or a good cold coors light. Beatle boys is that a group? I know the beatles yeah yeah yeah!! They are my favorite I went to a concert sat night to see The Fab Four they put on a great show ed sullivan and all with lots of audience participation and hey I was 18 all over again they even sound like them with their cheeky humor. They are the group out of LA cuz there are a lot of them it was worth every penny, I danced embarrased my husband, hooted, hollered gave them the peace sign only sign I know Far out baby I would do it again in aminute if they were back in town. gotta let it go sometime. I still have my vinyls Revolver etc. love it I have cds downloaded on pc at home and sometime I just let it rip Mom can't hear it no how the dog howls but hey I figure its not hurting his ears he's just partying with me. Let it all hang out music soothes the savage beast. Including dads find something he likes and play it for him I like some that go all the way back to the 50's so there is bound to be something he can relate to. Go for it and have fun life is too short and before we know it we will be them. Have a great day
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duh after rereading its beastie boys hahaha yeah I know them to go for it.
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sometimes this site bites I posted don't know where it went I'm logged in let me try again find some music your dad can relate to I am sixty Ilove the beatles still actually we went to a concert sat night to see The Fab Four Ed Sullivan and all, lots of audience participation, these kids even talk like them, there are a lot of groups but these hail from LA I recommend them for any Beatles fan. Go have fun life is too short I even had some Wine to help the Whine , don't ever stop whining to us we need you and you need to do it. But have some fun have some people over they don't hae to be friends they're hard to come by and see if dad wants to play cards or at least watch and tell you how to play your hand. Haha. Try to have as much fun as you can it sure does help so does some White Zinfindel and A cold coors light.
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well shoot I was on the wrong page no wonder I didn't see the post so really I'm not repeating myself LOL
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Oh Yeah Baby! I live in the rocky mountains, so coors is a friend of mine. Actually, I'm 30 min from the coors brewery in colorado. They give free tours everyday all day, and free samples, sometimes of their new products, MMMMMMMMMMM! I'll try that, Dad was always singing and dancing with my Mom. It's so sad to see that he shuffles when he walks now, and has arthritis in his back. I sure miss the old Dad! Today, is my 25th wedding anniversary, my children are going to babysit grampy so we can catch a movie, and dinner. Hubby's not telling me where we are going, a surprise. Have a great day friends!
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Well gee I'm jealous I live way down south in the land of cotton away away

have fun glad surprises are surprises and wonderful. Yeah find some music they used to like he can reminise (sp) about the old days and its okay if he gets a little meloncoly (sp) but at least he can remember some good things to. That would be a great gift for him his own cd player with some special cd's you can find on ebay or amazon.
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Actually, I need to remind him to use his cd player with headphones. Also, he has accumulated, by way of mail order and tv ads, numerous cd's that he hasn't even opened yet. Yep! If I can find him on a good day, which are hard to come by these days, I will yank out his cd's, and family photos, and sit with him on the couch and reminisce. I have 50's, 60's, 70's, I love ALL types of music.
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Me to right now I am listening to Celtic I love the Celtic Thunderespecially one song that reminds me of the hard times we've had thru 38 years of marriage and my one and only surviving son called my boy probably can find it on line to listen to if you have my space or something like that. Yes, that would be good for him, now mom can't hear so music is out of the question but I am getting ready to go thru two huge trunks of pictures to organize and Mom will probably like to see some of those. You have a good day. and a great evening hugs and love

neon
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Neon, 38 years? Wow, I still feel wet behind the ears! LOL OOOOOH, I love Celtic! Thanks neon, you too!
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I'm new to this and have been looking around for someone who'll understand. I'm caring for my husband who has COPD with poor lung capacity and oxygen for 4 years. In Oct. he got MRSA in the hospital, so we had 10 days of out patient antibiotic infusions and after 2 more trips to the hospital, he got it again. We got the antibiotic that had a $759 co-pay, he took it and is on a down hill slide again. I don't know how long I'll have him, we've been married 56 years. I positively hurt when I see couples shopping together in Walmart or enjoying dinner in a restaurant. I'm having to learn about doing everything in the house as he doesn't have the energy to do anything extra. I manage to get family members to do repairs as needed and my daughters gave me a cleaning lady! I am able to get some time for me and also walk in the mall at least 4 days a week. I am self employed as a piano teacher an work at home about 15 hours weekly. You may think that I have it all together....some days things go pretty well...then he can get a big breathing problem and when we exhaust everything we have here...so it's off to the hospital again. It's this up and down thing that I can see coming... one day he won't come out of it...maybe we'll have to get hospice...I'm not ready to face it...the grieving process started a long time ago for me...there was a time when I thought I needed to know what is going on with him but now I have decided just to ride it out...we live one day at a time anyway.
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Hi Marna,

I am glad you found this site. With all that you are dealing with it is good to find others who understand a bit. When I first found this site it was such a relief to not have to explain MRSA or anything else - we can truly empathize and understand the sheer magnitude of what you are going through. Even one day at a time can be difficult when you are facing your husband's illness and all the emotions that go into coping and trying to redirect your energies where they are needed. Words can't describe it - and here on this site we can read between the lines. It is late, so I am the first to say hi, but rest assured there are many people who have similar experiences. This site is safe place to ask anything - even if you just really need someone to say hi so you don't feel so alone.

You take care - there is no timeline for grief, and there are alot of people who understand. Please stay a while and join us. It is good to meet you.
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hi marna , welcome, keep posting i promise it will help. on these pages are the most informitive people i know. i say that having never met anyone face to face. I think the fact that you are recognizing the grief that has already started is good.try to take care of your self hopfully everything well go as god planned..... sandy
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(Marna) so it's off to the hospital again. It's this up and down thing that I can see coming... one day he won't come out of it...maybe we'll have to get hospice...I'm not ready to face it...the grieving process started a long time ago for me...there was a time when I thought I needed to know what is going on with him but now I have decided just to ride it out...we live one day at a time anyway.

You're 2/3rd of the way there, great progress you've made to handle whatever comes your way. Your clarity is impressive. You already know what many still have to learn: Our worries, frustrations and concerns will not stop the march of time. One day at a time is all any of us have. You're making the best of a bad situation. Carry on, and the best to you from all of us.
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Marna-welcome to this site-you will meet many wonderful people here-I also take care of my husband but do not have it at all as bad as you do. HE HAS HAD MARSA many times once it was 6 weeks of out pt. infusions now I have him go to rehab for the IVs.
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Marna A great Big Welcome and a Hug for you. I can only imagine how I will feel when it is time to take care of my husband. I have taken care of his mom my dad and now my mom My dad had MRSA to thats a tough one. Please know we have all had similar if not the same situations yes it is grueling, thank God for your Daughters and thank God you have recognized where you are. After all my experiences I know these are things we have to deal with. Being real about it helps post anytime all the time if you go back to read past posts you know i do all the time. Expect to hear from you this is a wonderful site what we don't know someone else does. If we are experiencing something new we can share it. This site has been a God send to me I try to encourage as much as possible, for that helps me in my plight and since I've joined I am not as stressed the stress will kill you. Take care and write soon Neon
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Welcome, Marna. Please keep coming back for the support of these wonderful people.

You are right that we all just have today. You mentioned early grieving. I am so glad you recognize that. People often aren't aware they are grieving, as our society "tells us" we grieve at the death of a loved one. Well, we grieve even more as we watch their decline. It's exhausting mentally, physically and emotionally. You are doing well in trying to take care of yourself. That's so hard, when you likely just want to sit and cry.

Not needing to know how he is every moment is good. It's part of detaching with love. You know you are doing all you can, and you can't "fix" this.

Blessings to you. We'll watch for updates.
Carol
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I hope you will not feel I am intruding on this but I need your help. I was a geriatric caregiver- so I can give some input. I Have a disease which has put me in a wheelchair but after three years of hard work, I walked again. I did that on my own without my children's help. That was 15 years ago but my body is giving in to the desease again. I am presently ill enough that I have to live with my children, but not ill enough to be a burden yet. To help them and feel good about myself, I do the housework, babysit, yardwork, whatever helps them and it makes me feel like I am contributing, I also contribute financially. I am presently about to celebrate my 63rd birthday.
I need help to prepare my children for what is to come. I need help to make it as easy on them as possible. They did not get to see the worst of my experience before, just what I considered the easiest parts and some freaked, some denied it was happening. They knew I had trouble walking basically. I need to know the problems you face when it is your family you are caring for. I cared for strangers.
I want them to be able to keep their lives, and not get too upset. I know they will get uspet some but I want to keep it as minimal as possible.
So is it ok for me to be here?
Also, I know about the crying, I used to let their children vent to me which helped them but I also hugged and held them and let them cry. A few I talked into hugging and holding the family member, telling them I love you so much and cry. So many times it made it family member feel better and the geriatric patient feel needed and useful. Even very ill people need this and can give love and comfort.
Please try it for both of you.
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You are very welcome here. Indeed, you will be valuable to us all. I, too, see my children go into denial. I'm around your age, without as severe disabilities but I do have RA. Kids hate to think of a parent who can't do what they could. It's really hard for them (no matter what their age). If I talk about my declining years, even though they know I make a living studying and writing about this, they quickly change the subject. Mom is not going to grow old or frail!

So, please keep coming back You belong here and your wisdom will be welcome.

Carol
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madyankee,
Welcome to this sight. I feel I really have someone to identify with(besides Cat, she's my cyber-bud!), because you and I have been or will be on both sides of that fence.
I am currently a paid caregiver after taking care of my dad for 8 years. And have recently been talking to my son about the very things you are addressing. I posted once, that we do not talk about these things with our parents or them with us, so there is a lot of confusion, resentment, ect.
I applaud you for thinking about your children and what they may have to witness, or help you with. The bottom line is....what do you want to do? Stay with family until you and them know it is time for assisted living or a nursing home? Do your children know what they will be asked to do?
No, it is not a very happy subject, but we all have to do it some time or other.
And we did and do get to see what the families go thru when hired aid comes in.God Bless you for thinking of your children and I pray a good outcome for everyone. Thank you for sharing....
Your children may be uncomfortable with this conversation, but give yourself and them the credit they will understand you are thinking ahead and trying to make things as easy as possible on everyone, yourself included. Let us know what happens.
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Mandy you are more than welcome- Lindam has been a great part of this site and you will be also. To those who posted about music if you can get some songs from the 30s and 40s to play for your parents it might make a difference. I was visiting my husband one night and a lady from recation at the nursing home was singing some old songs and one of the pts. a retired doc who hardly knew his own name sang every word of the song and I just stood there and was amazed by it. and I had seen it other times the pts. who were in bad shape would remember the words and sing along even those who did not ever get involved with others.
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It's good to hear from a person who is facing real problems. I cared for my dad along with nurses
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When I lived in IL, I used to play the piano for nursing home patients weekly. I have seen alzheimers patients who could sing words to old songs but could not converse with anyone. I used to have one lady who was ready to dance when she saw me coming. The nurses were afraid she'd fall! Music is a good thing. Since my business is music, I know the true value of it in our lives. If it were not for music, books, & old movies, my husband's life would be miserable.
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Hi Madyankie,

Welcome friend. Not only do you fit right in; you have brought up an issue that we all think about as caregivers. It doesn't matter whether your experience is family, professional, or both. We are all mortal and what you are so thoughtfully bringing up today is something we will all face at some point in our lives. I am very touched at how thoughtful and gentle you were in describing your situtation and the fact that you are looking for a sounding board, support and other viewpoints on how to approach both your own decline and the reactions of your children and grandchildren. Just reading your first post has given me insights and a sense that if you can handle it, so can I.

Coincidently I had been doing some reading on intentional communities while mulling over the issue of my own mortality. The conversation you have started echos that of others who have chosen to be self-directed. I guess caregiving is a double edged sword - we give tirelessly to care for others, and in doing so have our eyes opened to our own future, and the possible behaviour of our family members when it is our turn. Perhaps in the end though, it is a blessing in disguise - we can accept what is with grace, and choose to be proactive in areas that are now still under control.

Madyankee - thank you so much for being so open with a problem that will help us all plan too.
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Welcome madyankie, and thanks to you other intelligent sensitive ladies, as well. What a blessing you ALL are! Thank you.
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As my mom gets worse, I find that I am having a hard time coping. The stress is wearing me out. My support group only meets once month, and using adult day care is only once a week on our budget. Any ideas?
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keep comiing here you will get help
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Hi Frank,

I see from your profile that you are the main person caring for your mom. There are many people who are in the same situation, and being the primary caregiver for a mom with Alzheimers is extremely wearing. There is no magic bullet for stress, but many of us have found that chatting on this board helps. I hope you will let us know what specifically is going on with you and anything else you would care to share with us.

Speaking for myself, when I found this site I spent alot of time just reading others stories and following their posts - it was amazing to find so many people who understood and were going through similar challenges. I found I could ask anything, and eventually I found a safe place to shake off the burden and stress for even a few minutes. We all have different tips - you might want to browse posts and see what resonates with you. Or if you care to share more, we can make suggestions. There are family caregivers and a couple of professional caregivers who bring amazing perspective to the subject. The moderator, and writers all are amazing and nothing surprises them - so if you would like to post to a specific person's private wall you can do so.

Welcome to the club. I hope being here helps

Cat
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Welcome Frank,
You will find this sight to be a "sanity keeper". You are doing an amazing job, but it is very hard under the best of circumstances. You will find a lot of good suggestions and support here.
Can you get someone to come in a few hours everyday? I don't know if you have facilities where you live that can help with that, but you can contact local organizations, even churches can help sometimes. Does your support group have information for respite care?
We all know how tired you are and it takes energy to find help, but it will help you in the long run. Let us know more about your situation, and what we can do to help. You must take care of yourself, and we will help in any way we can. Let us hear from you. God Bless
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