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By lurkingforacure On 2010.12.09 13:20
I have so many things crushing down on me. How to cope, how to cope.

Last night my husband had a muscle cramp so bad he was yelling in pain...the worst part is...I can't stand this, I was sleeping in one of the kids' rooms (on a bunk bed recently given as a birthday present, what a godsend it has become for me) because he's been up so much at night lately I haven't been able to get any sleep, and I didn't hear him. How horrible is this? I asked him why he didn't come get me, and he said he couldn't move. I can't stand how terrifying that must have been for him. It has been haunting me ever since he told me. I'm torturing myself with how scared he must have been, in addition to being in pain. Talk about panic, I can't even imagine.

Do I sleep with him so I can be there in case the cramp happens again, in which case I get no sleep as he's up five and six times a night....or sleep on the bunk bed so I can get some sleep so I can function? I've told him at least one of us has to be functioning and he agrees, but that was before the cramp. What do I do?

He seems to be declining much faster recently and that is freaking me out as well. It's a downward spiral and nothing, and I mean nothing, seems to help. Biking, walking, massaging him whenever he asks, keeping the kids quiet, eating the best food we can afford, this supplement, that supplement, etc. etc. etc., nothing. It is heartbreaking and I hate it. The harder I try to help him stabilize the worse it seems to get.

Then my mom, who does not have PD, had a wreck yesterday. She calls me but I cannot get there in time before I would have to leave to get my kids from school. I talk to the other driver (it was my mom's fault) and then tell my mom what she needs to do and although everything is OK (no one hurt, cars OK) she tells me how horrible the wreck is "on top of everything else I have to deal with". I can't imagine what that is...her house is paid for, she has money in the bank (never enough for her, of course), a wonderful dog I bought for her, I even planted four trees for her and a perennial flower bed this summer, but it's no good, none of it. She has become even more negative than she usually is (her personality) and it's really wearing me down. I see her at least once a week when I drive her to a doctor appt. or physical therapy, and call her every day other than that to check on her. When I ask her how she's doing, she always without fail will say "horrible" or "terrible". It's never a good day for her. I try to remind her how blessed she is but I feel I am just wasting my breath. Today I can't even bring myself to call her because of the earful of misery I will get. I don't think I can take it. Tomorrow when I call I will get the guilt trip for not calling today on top of the other complaints du jour. I wish she could be happy.

My kids also need me to take them places and help with homework every night, make dinner, do laundry, pack lunches everyday, all of that stuff mommies everywhere do, and today my husband tells me we should not make Christmas a big deal, that he's "tired of all that" (he has never liked the whole Santa concept and hates lying to the kids about that) but honestly, we've never had huge Christmases to begin with. The kids love the music and decorating and yummy foods we usually don't get and the whole feel. They will only have this time in their lives now and why deliberately take that away? I wonder if he feels this way because of the PD, and if so, it's not fair to deprive them of their childhood because of that. I fear the PD is making him a scrooge and I don't know how I can offset that so that the kids don't get cheated any more than they already are by this damn PD.

Did I mention my ancient kitty cat is dying? I've had her for 20+ years. She could fit in my sneaker when we saved her, she was so frail and tiny. She barely eats now and goes to the bathroom anywhere and everywhere and every feeble meow sounds like it is her last. I can't bear to put her down as I don't think she's suffering/in pain but watching her is so very hard. She is just a bag of bones now, used to be so plump and shaped like a football, she was adorable.

I try to thank God for the blessings in my life, I know there are many and things could be much worse. But I am very worried as the loved ones in my life need more and more, at the same time, and my kids need their mommy, how I will cope. I know no one has any magic bullet for me, and if you do, please speak up. I just needed to get this off my chest.

By BOCareGiver On 2010.12.09 14:08
Argh. I wish I had a magic bullet for you, and if you get one, let us all know.

However, in one area, communicating between rooms, maybe I can offer a suggestion. Our cordless phones have an intercom feature which my PWP uses to "page" me when she needs my help. I've also thought about the use of inexpensive walkie-talkies (easier to use, she won't dial 911 by accident...) or even a wireless baby monitor (doesn't require the PWP to be able to operate a handheld device): some have parental units with a vibrator feature, which may make it more suitable if you are sharing a bedroom with your kids.

You seem like an incredibly strong and insightful person to have managed to survive and thrive thus far. If it came down to wagering, I'd look at your track record, and bet that you'll get through these tough times as well. It looks to me that you know what your priorities are, and will make the right decisions to achieve them.

By karolinakitty On 2010.12.09 15:22
Lurking ... i have no magic bullet either, but, i do know someone who is in your shoes... her spouse has PD, they have young children, she runs a day care and has a blog about it all called "life with Shaky".... perhaps she might have a bubble bath solution that might help you....
if you email me i will give you an email address as she is also currently looking for PDers and caregivers to interview for her blog........

By Lacy On 2010.12.09 15:56
I would give anything to be there to help you! You shouldn't have to deal with all this by yourself.

Now for my advice....regarding your mother... and I hope you take this the right way. It seems your mother is fairly independent, can drive and get around and seems to be able to take care of herself. I say.....let go of her. She is NOT your responsibility at this time, your children and your husband come first now and it's time she realized that. If she needs help, she can call a friend, her clergy, or a neighbor. Tell her you're not able to deal with her problems (which don't seem to be nearly as serious as yours) right now because you're at your breaking point. (this woman should be there for YOU, not you there for HER!).

Try not to let her whining and griping affect who you are and who you want to be for your family. I don't know how you're able to hold it together and deal with that woman at the same time.

Now for your beloved kitty. You've had this precious pet for a long time. Possibly the most loving thing you can do for him/her is to let him go. I know it's hard, but finding him dead somewhere will be terribly hard on you, not to mention the children. I know, I've been through it. But if you do it out of love for Kitty, you'll never regret it. It's possible if he's meowing a lot these days, he IS uncomfortable or in pain.

My heart goes out to you and as I said, I sure wish I lived next door to lend you a hand! Try to find some peace within yourself. Spend some play time with the kids. It doesn't matter if the dishes aren't done, let them help you with them when you're done playing. Have them pitch in and help with dad if they're old enough and able. It will build strong character and you won't regret it.

Every chance you get, try to grab a little something for yourself, a few miinutes' of rest, buy yourself a nice box of chocolates and hide 'em, you'll be surprised what chocolate can do for you.

And remember, if you don't take care of yourself, you can't take care of anyone else. I know you've probably heard all that before as we all have, but it's true.

Hang in there, dear one......if you happen to live in southern Wisconsin, I'll be happy to come help you out!! Wouldn't that be great?!!!

By LOHENGR1N On 2010.12.09 16:11
Lurking, I don't know what your resources are, but like the rest of us they are probably drained or draining. If you don't get some rest you'll be no good to anyone. You knew that though. I had a thought about baby monitors, intercoms and such. While they do work they rely on sound, this may not be so good if you're trying to sleep with one ear open incase you're needed. (You'll hear every creak and groan the house makes). I have a few deaf friends and their door bell is wired to a lamp or light that goes on when the bell button is pushed. My thinking is if you got a desk lamp one that throws a narrower field of light you could point it so is will shine at you if activated. Now the trick will be to find an electrician to wire the outlet to a button in your husbands bedroom he could push if he needed your help. This would be less intrusive to the Kid's trying to sleep or walking up when it goes off. I know electricians don't come cheap so another thought came to mind to find one to help. Try contacting your local Lion's Club. They are a very charitable organization with members from all walks and vocations Who might very well donate time and supplies to help you. You never know till you try.

The Holidays? I'd say make sure to keep them You also need them, you need some semblance of normalcy too. The lights, music and cookies along with the Children you all need this balance. Please don't let this Grinch (Parkinson's Disease) steal the holidays from you and yours. Christmas morning stand there like Cindy-Loo-Who singing wha hoo dory Christmas comes each year. We all know Parkinson's steals enough from us no sense giving it away make Parkinson's work for it!

Your Mom? I don't know what to say, I do think you know what to say and how to say it, it's just the time isn't right now. When it is I know you'll be loving and tactful in handling it. I hope you and yours enjoy the season as much as can. Take care, best of luck and hang in there.

By Pearly4 On 2010.12.09 19:29
Lurking -- I definitely agree with everyone - you need to take care of yourself especially after describing all the additional stresses that you suffer.

One inexpensive solution we found early on was a wireless battery operated doorbell. (I paid less than $10 for ours through a catalog.) We kept the ringer in our room, she slept in the doorbell near her - all she had to do was push one button -- believe me, it was very effective! (This was during the period of time I cared for her at night myself.)

Forgive me, I don't remember how many children you have but have you wondered how all of you slept through your husband's cries for help? I wonder -- as my mother's disease progressed she began to suffer from the vivid dreaming so much that she would at times insist she had fallen out of bed the night before and we had ignored or not responded to her cries for help. We lived in a very small 2 bedroom house. My husband and I slept in shifts so one of us was always near her bedroom -- I don't think we could have missed her cries for help all the times that she claimed we had. The things she feared most were the things she seemed to dream about -- falls, getting lost, children being hurt and not being able to help them......a long list.

Definitely go ahead with your Christmas -- your husband doesn't need to participate -- mine didn't and had no disease to blame for his nonparticipation. We simply went on with things and enjoyed ourselves and if he joined us that was great, if he didn't, we had fun anyway.

As for your mother -- she's ill, you know that, dismiss her and her complaints, you can't take care of everyone! And even if you want to try to take care of everyone, don't forget --- YOU HAVE TO TAKE CARE OF YOURSELF FIRST!

By Emma On 2010.12.10 04:54
Lurking, I'm so sorry that you have to deal with so much all at once, especially during the holidays.

I know how hard it is to get tough with your own elderly, and seemingly selfish, parent but you might have to do that.

I really empathize with you about the kitty. Our 8 year old cat died suddenly right in front of me about this time last year. Don't underestimate the importance of a pet, especially one that you have had for so long. Often they can be our best friend and our comfort when we need it. To watch something that we love so much slip away is devastating. My heart goes out to you.

As far as Christmas, have it without your husband. So what if he's tired of it, it's not about him it's about the kids. My dad never participated in holidays with the family (he was an alcoholic and preferred to go somewhere by himself and drink). We got used to it and had a good time without him.

I have the same problem with not hearing my husband in the night. We have a baby monitor but I just don't hear it. The doorbell idea sounds good to me.

Lurking, you are such a strong person who is dealing with so much. I'm often overwhelmed by what I have on my plate and I don't even have children at home. I honestly don't know how you do it. I too wish that I could be there to help you. Taking care of yourself is so much easier said than done but it really is important. We are all here for you. Please be good to yourself.

By Michele On 2010.12.10 08:41
Dear Lurking, you are such a strong woman! You have been handling sooooooo much but now it's time to let some of it go. You need to put yourself and your health as a priority. Let your caregiving for your mother go! As another poster said, she should be supporting you - not making your life harder! Do not feel guilty about her (she has her own issues) and just keep reminding yourself that your priorities are your own health and sanity so that you can continue to care for your family. You have too much to take care of to coddle and placate someone who doesn't see it, appreciate it or who uses it to manipulate you. Don't giver her this power any more. You need all of your resources to keep on going. If you start to feel guilty about your mother, just picture her as a crying baby in a crib who has thrown out all of her toys and wants your to pick them up for her. Do everything you can to have a wonderful Christmas season with your children. Hugs to you.

By caregivermary On 2010.12.10 09:59

baby monitor works for me. I even wear ear plugs and have the monitor on the nightstand by the bed. I do hear when my husb is calling my name and when he is making a lot of noise. don't put it by your cell phone or a light fixture due to interference. small investment. sleeping 6-8 hrs a night will keep you alert and happier.

remember you are only ONE person and believe me you cannot do it all.

take care

By parkinit On 2010.12.12 10:39
Lurking -

My heart goes out to you. We had to put our cat to sleep last year as well. I carried him up and down steps as he was too feeble to do so for a week and then when he stopped eating, we decided it was time. The vet said he was probably in pain before that, so I felt bad that we had not taken him in earlier. So, I think you know what you need to do, sweet lady.

As far as the mother goes, it sounds like it is time to have a heart-to-heart conversation with her. Tell her you cannot take any more "burdens" and her dumping on you every time you call with all her ailments and woes are difficult for you when you have so much on your plate. Challenge her to be more positive and ask her to promise in conversations to only talk about things that will cause laughter or uplift one another - you can promise to do the same for her. Be frank, tell her that conversations with her "bring you down" and you need support NOT MORE NEGATIVITY.

My dad is dying of cancer right now - just weeks to live. I try to call my mom on the evenings when I am unable to visit her that day. We talk about past family moments, what she/we is/are dealing with and dealing with quite well, how she misses my dad's good wisdom and guidance. One comment she made just last night after having to deal with a plumbing issue was "I'm growing up fast." This from a woman who has been a housewife all her life and is now 78 years old. Maybe it is time to tell your mom she needs to "grow up."

Does your mom ever ask how YOU are doing? Mention this to her. Tell her it would be nice to have some give and take. You want to care for her, but is she caring for you in return? Challenge her to do this; it will make her a better person.

I've been thinking about the baby monitor myself as the walkie talkies don't always seem to work. Good practical advice, as usual, from caregivermary.

Every time I start to feel sorry for myself, and I've been doing that lately, I read posts such as yours and think, in total admiration for you, that there are others tougher than I am out there and I tell myself that "I need to buck up, baby." :) Keep that chin up, learn to shed what you must to survive. You truly are in survival mode. Remember that Christmas is a stressor for your spouse, so this is probably where some of his comments are coming from. Yet, I wouldn't give it up for the world if I had kids.

P.S. - If your mom complains you didn't call, say, "The phone line works both ways!"

Hugs to you,

By lurkingforacure On 2010.12.12 15:53
Thank you everyone for everyhing. I reread my post and thought "Good Lord, what a whiner I've turned into." I didn't mean my post to read like that, it was one of those days where everything is bearing down on you and you simply cannot see your way forward, yet you have people depending on you to take them there.

I tried the baby monitor, problem for me was, it picks up all noise so even if you turn it down low, you still hear covers rustling and your spouse getting up and turning on lights, flushing the toilet, coughing, eating etc. I think that alarm idea might be better for us and will check into it.

As for my mom, I think it's so interesting that someone posted their mom said they (the mom) were growing up fast in the face of their spouse who has cancer. I have often thought that of my own mom. My hesitation to do the excellent suggestions here are that I am a bit worried she may be getting Alzheimer's and in that event, well, I know she cannot really help herself. I have read enough about Alz. to know that forgetting things is only a part of the disease, depression is huge as well as childlike behaviour. So I'm trying to take it one day at a time and it really helps to have you all here affirm that my priorities are kids, husband, then mom. Sometimes the lines get very blurry and it's hard to keep things straight.

I'm so thankful for everyone here. Thanks for listening.

By susger8 On 2010.12.13 08:53
Oh, no, you don't sound at all whiny. Everyone has those days when the multitude of burdens just gets to you.

A wireless doorbell would be a great idea. We have one in our house because we can't hear the regular doorbell when we are downstairs. No wiring, no setup, and you would definitely hear it.

About the leg cramps. I used to donate platelets, and the anticoagulants deplete your body of calcium, which can give you leg cramps. At the donation center they give you a couple of Tums to chew if you start feeling crampy, and they work pretty quickly. You might see if Tums help your husband's cramps, and if so, you could leave some next to his bed.

A few years ago I had a bit of a meltdown at this time of year. Taking care of Dad was making me stressed, I was worried about my job, and my 17-year-old kitty was close to the end of her life. (And we had lost our other cat, who was 18, earlier in the year.) Somehow it was the cat that really made me lose it. I was weeping at my desk at work. I ended up calling the Employee Assistance person at work, who is just a lovely woman and didn't mind my crying on the phone for twenty minutes. I ended up going to talk to her about three or four times -- it helped me just to have someone to talk to. And she gave me some helpful suggestions. I still use one thing she suggested, when I get overwhelmed, which is to take just a couple of minutes, go into a quiet part of the house, and just sit with my eyes closed and breathe slowly.

Is there any kind of counseling service you could go to? Lots of counselors do short-term counseling (just a few sessions) which can be very helpful.

Oh, and definitely do the holiday activities.


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