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Topic Bad day too Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2010.04.25 13:47
I too am having a bad day, weeks actually, like mylove posted. I try to let my husband have as many naps, rests, time to do his hobbies (music mostly), but find myself stretched to the max and don't know what to do. Just yesterday, I had to take my son to his soccer practice first thing in the morning, he was, and has been, the only little boy there without his daddy. It is so sad. Then I had to get my daughter from a sleepover (I had to take her over the night before), go grab a birthday gift, rush home to feed everyone, and haul off to the birthday party. Alone. None of my son's friend's parent's have ever met my husband. We got home from the party after 6pm and arrived at home to find my husband there, hungry, as we all were too, so I had to make dinner, get everyone ready for bed, etc., etc. I wonder how nice it would have been to have come home and found dinner already made, but no cigar. It was saturday and I was hoping to grab a rest at some point.

Today is the same, and I now have a question. He has gotten up, and I KNOW he feels horrible. But it is maddening to walk in, with him standing at the stove telling me the kids are ready to eat breakfast, and not a thing has been done. We have a refrigerator full of food and a pantry equally stocked. It's a beautiful day and I am so tired. Our little boy just wants to play with his daddy and get some love but my husband is grouching at him which would normally not upset me but today my husband has spent pretty much the entire morning either resting or playing his music and I can't help but wonder can't he at least spend a little bit of that energy on his children? Is that too much to ask or really, does PD just not allow for that? I guess I am wondering if someone can spend five or six hours doing their sedentary hobby, why can't they spend ten or fifteen minutes playing with their kids?

I don't begrude my husband anything that he likes to do, nor do I ever tell him how long he can do it. But I don't understand how someone can spend hours and hours doing one thing and then suddenly declare they just don't have any energy to play with their kids. Is that part of PD? How can I help him allocate his energy better so our kids get something?

Like I said, I am normally very understanding and I just go with the flow. I guess I am just run down, and worried, because today I actually heard my husband really snap at our son, totally out of the blue, and I can't have that. He is just a little boy and does not understand why daddy can play his music "forever" as he puts it, but not play with him. It's horrible for his self-esteem and I don't know that I can undo the hurt. His little face when he came in to me after being snapped at by my husband was heartbreaking.

I am wondering about this, so that I have a better idea of what is reasonable to expect (ha, what a concept with PD). Anyone have any ideas,suggestions, or info., I'd love to hear them. Thanks.

By Emma On 2010.04.25 14:39
lurking, I feel so bad for you. I really do not know how people with children and jobs do this. I'm exhausted all the time and don't have either kids or a job to deal with. My heart goes out to you and your children. One thing I've noticed over time in reading the messages on this board is that a lot of people complain about, or express frustration with the fact that their spouse with PD is extremely self centered and seems to have no awareness of other people or their needs. That is true of my husband as well. He expects me to be there at his beck and call and doesn't even attempt to be thoughtful or courteous to me. It's all about him. One day last fall I was sick and in the bathroom vomiting my guts out when he came in and demanded that I come back in the living room to change the channel on the TV for him. It's not just with me either, he's rude,thoughtless and demanding with other people too. I can't explain it. At least I'm an adult and can deal with it, your poor kids must be so confused and hurt. Have you talked to your husband about it? Of course, that can be an exercise in futility too. No solutions I'm afraid, just know that I hear you and care about you. Em

By karolinakitty On 2010.04.25 16:49
As with Emma, i don't work now and both families are grown, over 20. I can only imagine having young ones around in trying to deal with this. The snapping at your son i would likely say drugs, i have readand seen where inhibitions are lost and that includes personality. Now mine doesn't snap like most, he gets firm. He's always been non-confrontational but now seems to want to take everyone on full head of steam. He still uses his wisdom but sometimes just says and reacts to whatever is going on. How hard that must be also with children. They do, i suspect know that daddy is ill? I know it can be so hard to explain to kids about drug interactions and medicine side effects, but it's worth a shot. Kids also have more sensory perception then we let on. They may know there's an issue but aren't sure what and may be afraid to ask why.
If he still works i can see him being tired and not wanting to play with the kids. His music is his therapy. As a musician i can play and sing all day rather then clean and cook. Mine was a chef but hasn't cooked a meal in years. He can't. His motor skills and mind execution are way off. He tried, over a year ago now i guess to make me some chocolate chip cookies from scratch and failed miserably. This was so sad for me. He cheffed with some awesome folks, some well known chefs and to see him fail at something a child can do is heartbreaking. Maybe your guy knows his limitations and so therefore doesn't want to attempt ball, afraid your children might "show" daddy up. Just some thoughts... i know you are sooo busy but maybe there is some info out there that might help you when these things happen and how to explain things to your kids. I just don't have any at this time, but am glad you shared with us .....

By cornhusker On 2010.04.25 17:35
Dear lurkingforacure, I was the caregiver, my wife the Pd. She had a run of 30 years with PD. Only the last 7 years was difficult, not any the problems you talked about. Please never forget you are the Hero for your PD. Your assignment is caregiver That leaves you in a difficult position no matter what. You are called to do more than you think you can do. This the normal way that PD works.
What can you do to relieve the stress? Get some help, have a face to face with your PD. Tell him what you're feeling. Caregiving is hard work, never let anyone tell you different. Only you can do the job you are doing. If some one asks to help you give them something that you are doing to make your load a little lighter. Pray! God usually shows up five minutes before it's too late. Jock Doc

By LOHENGR1N On 2010.04.25 18:09
lurking, Have you ever gone to the A.P.D.A's yopd web site? As I've posted before they can help families with children dealing with these issues of Parkinson's and have age appropriate message boards (think of them as our forum here only for children of a Parent with Parkinson's) on these boards children can discuss problems they are facing at home and other children can help telling how they coped with or dealt with their problems and feelings. I think this would be a great help to your children, yourself and your husband. Take care, best of luck and hang in there.

By lurkingforacure On 2010.04.25 19:23
Yes, Al, I've thought of that but our youngest can't even read, let alone get on a computer! I think down the road it will be a big resource for our kids, but they are still really too little, I think. Thanks for thinking of us.

By mylove On 2010.04.25 22:06
Lurking, I didn't reply here yet because I was waiting to see if anyone had some solutions to offer. I wish I could offer something better, but where you are with little kids is so hard. I wish you the best, and I hope you find something that works.

I'm just here to say 'I hear you, and we're here for you'. It is so stressful sometimes. We think we have it all balanced on a day to day basis, and then life happens and the out of the ordinary stuff just tips everything over. Hang in there, as Al would say. This has got to be the low swing of the pendulum. That means it's got to swing the other way soon, right?

By parkinit On 2010.04.26 11:21
In reading these posts, it keeps reminding me of what the doctor recently told me: The PD person will become very selfish. I've seen that in the many posts I've been reviewing over the last several days. They think of their own needs and very seldom remember others - and especially, it seems, their caregiver. It's not the PDer, personally, it's the disease affecting his/her mind. I try to always keep this in mind when I'm feeling lonesome or hurt or angry - be mad at the disease, not my spouse.

With young kids this understanding would be difficult; they just see a grouchy parent. Frankly, I still have a teenager and I try to keep him away from my spouse as much as possible to prevent any unsavory encounters. Honestly, as the children gets older, this is easy to do. Luckily, this is a stepparent, so there is a solid dad in the background as well to nurture from a fatherly standpoint. Hang in there, Lurking.

By Pearly4 On 2010.04.26 12:38
I've hesitated to give input because my caregiving involved a parent, not a spouse. But I feel I must add that I really think the total self-involvement is part of the disease - maybe not dementia per se but some personality change that comes about wtih the disease. I also think the OCD behaviors mentioned in other posts aren't really OCD - they fall in the same category. It seemed to me then (while caretaking) and now, that the negative parts of a person's personality seem to come to the forefront -- as if they've lost the capabilities of being able to control them.

Final word -- doesn't matter what is causing them, your Parkinson patient can become very much a child in an adult body -- don't be afraid to set limits and enforce them for you own sake as well as that of your family and children.


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