For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in

Topic How do you help in this situation? Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2011.09.07 08:56
I'm really frustrated today and need to vent. This is the THIRD time I have tried to sit down and post, and keep getting interrupted it's so maddening.

I need some help or advice on what I can maybe do in my situation. I have really been trying to get my husband to eat well, as I have read Dr. Wahl's book (she had MS and has recovered through diet). I always have fruits and veggies in our house and yesterday was going to be the new start of our attempt to follow her program. We tried before and didnt' stick with it, and I've been watching my husband struggle as he eats all the wrong things, the more grains he eats, the worse his symptoms, I can see it. Last week was particularly bad, I had a lot of new snacks for the kids, crackers, goldfish, all grain products, he ate almost all of them over the course of four or five days (must have been three or four boxes of assorted cracker-type things) and had one of the worst weeks ever. So, I started anew on the meal plan, hoping we can get back to where we need to be.

I went out and bought pounds and pounds of fruits and veggies so that if a snack attack occurred, we'd be covered. I had hard boiled eggs ready to eat, salad, all kinds of fruit, all good stuff and on her plan.

This morning around 5:30am my husband comes back to bed and he is chewing something and wakes me up. I ask him what he has been eating and of all the things we have in the house that are on the meal plan, he has eaten a bunch of tortilla chips and chocolate covered almonds which I had hidden for the kids but he found. What a way to start the day. Now his meds won't work worth a damn and he's still in bed feeling like crap because of what he ate. I am so tired of playing food police particularly when he doesn't cooperate. Sure, he'll eat the salad, but then he'll wreck everything by eating half a loaf of bread (NOT on the meal plan) or something else.

I feel so much pressure to cure him, he has even told me he is banking on me curing him (we all know if anyone is going to really help our loved ones, it's us) and normally I have no problem with that...but when I'm busting my ass to keep our household running, the kids' needs taken care of (a whole job in and of itself), being literally everything to everybody, I dont' appreciate it and feel like my efforts are futile when he goes and undoes all the good I am trying to do.

He has told me not to have stuff in the house if I don't want him to eat it. I can't do that, our kids need bread and cheese and it's not fair or healthy for them to ONLY have what he can/should eat.

So what do you do? Do I just say screw it, when you feel bad enough you'll stop making things worse...or is the lack of discipline really a PD thing that cannot be helped? He'll exercise every day, I even go walking with him at night when I am beyond tired, which I am going to quit doing if he's just going to undo the benefits of that exercise by eating too much and the wrong things. I guess I see myself working really hard and putting a lot of effort into trying to help him, and he's undoing all of that, so why bother? It's killing me and I'm cranky and tired and unfocused and it doesn't seem to be helping anyway. Does anyone else have this issue?

By packerman On 2011.09.07 09:47
easy for me to say, but yes, i think you need to let him deal with the consequences of his eating binges.
for years, i tried to "manage" my hubby's eating and activities and that made it worse for both of us. i treated him like another one of the kids and that made our resentment of each other even worse. it seemed like the more i tried to control him, the more he resisted.
you can't want it more for him than he wants it for himself.
since i've backed off, things have been better between us and he has actually lost 15 pounds (he needed to anyway).

By ILoveWil On 2011.09.07 16:23
My heart goes out to you. Your plate is really full and sounds like you are sleep deprived too. The responsibility you have laid on yourself is probably too heavy to are not responsible to cure him. As I see it, we are responsible to know the facts, to carry them out in as healthy a way as our family member will allow. Your husband says he is expecting you to cure him but don't accept that as your mandate. He is also responsible to take his meds, eat the foods that you are preparing for him and if he doesn't follow this plan to better health, don't you blame yourself or become sick yourself over it. We can't force anyone to do the right thing for themselves nor should we feel responsible for their own failings. Sounds like you have a great heart and are doing a super job of trying to help him. Just relax it a bit for your better relationship with him. Let him suffer the consequences of his actions and maybe he will listen to you and agree with your plan of eating the healthy foods. You sound like you need a little break...go to a good funny movie and have a few belly laughs. It really helps. Angel hugs to you. Don't give up, just have a break for yourself and get some sleep.

By Michele On 2011.09.07 18:09
Not only can you not do it for him, you are enabling him when it comes to food. He expects you to cure him? and you buy into that? We as caregivers are in such a tough situation. We do it because we have big hearts and love our spouses, but it's hard to stop sometimes and go from taking care of them and doing too much to the point it can be detrimental. I know I do this too. Your responsibility ends at keeping healthy foods in the house. He has to want to do this himself. It's his body and his life. Of course, you get to watch as he does things that are bad for him and make yourself crazy. On the other hand, he won't change unless you draw the line. You know the old saying, the definition of insanity is doing the same thing over and over and expecting a different result. You are doing an AMAZING job keeping everything together. Maybe you need to let this one thing go. My heart is with you.

By LOHENGR1N On 2011.09.07 19:43
Lurking, My Friend you have put so much pressure upon Yourself! Reading your post what jumped out at me most was your statement about Curing your Husband and His relying on You to cure him. We all hope for a cure but the plain fact is right now there is no cure. Something somewhere, somehow set about killing our brain cells that produce dopamine. Right now nothing short of a Mary Shelly novel is able to resurrect dead cells or bodies. We can help ourselves and loved ones feel better and help the medication work better through diet and exercise but cure? No, not at the present time.

Even with gene therapy or stem cell's we're not going to cure until the cause of this underlying disease is found. Research is not getting this or choosing to ignore this fact. These two areas of research I like to put it simply as, There is a factory (our brain) the workers are getting sick and dying (dopamine producing cells). Research is trying to replace these dead and dying workers with healthy ones. But the disease (whatever the cause of our Parkinson's Disease still lingers) over time these replacement workers sicken and die also. No matter how many times you replace the workers with healthy ones this cycle will repeat.

So perhaps if you both look at it from a perspective of We can help our body and medicine work better to control symptoms and combat the effects of Parkinson's on yourselves and the family as a whole instead of putting yourself in a position of working a cure or being relied on to cure Him? You cannot be everything to everyone! You can be a partner to Him in helping fight the disease but He has to do his part, if not he will find himself in bed feeling rotten.

Reading posts about Patients not helping or not trying to help themselves reminds me of many years ago a television show (maybe 60 minutes?) did a piece on Mohamed Ali. It seems He was at that time notorious for not taking His medicine. When asked how they made Him take his med's (Imagine trying to force the ex heavyweight boxing champion to take pills?) one of His Daughters said well We can't force him but we set the pills by him and ask, Daddy don't you want to move today? If you don't take your pills you won't be able to! Most of the time it works, not all the time but most of the time. I guess sometimes you have to tell it like it is and let them make the choice. However in the case of Ali, remember if He didn't take the pills they wouldn't help him around, if he did take them and needed help it was gladly given. While I'm not a proponent of "tough love" by any means at times we can all use a small dose of it. Take care, best of luck and hang in there.

By rmshea On 2011.09.07 23:06
It is interesting that so many of those we fight to keep going seem so disinterested in helping themselves. I thought it was the disease making my MIL so inattentive and rebellious but it probably is just her! And to read Muhummad Ali wouldn't take his meds either???!! Just wow. I had to withdraw myself emotionally from the whole 'you forgot your meds' and explaining 1000's of times why she needs to take them, and take them ON TIME. I lay them out once a week and walk away. I never cease to learn from reading these posts. As with all of life, we each make our choices and live with the consequences.

By plcpainter On 2011.09.08 09:20
Dear Lurking,
If I inserted the word "stocking" instead of "snacking", I could have written your post! My husband with PD has had prostate cancer and radiation. Seven years ago when he was first showing symptoms of PD, his lymph glands in his left leg (the PD side) quit working. He was forced to wear a high strength compression stocking from toe to crotch because of lymph edema in his left leg. When he doesn't wear the stocking, his leg swells to enormous sizes and the only way to reduce the size is to do manual lymph drainage and wrap it with a series of compression bandages. Manual drainage is a particular type of massage therapy which I've been trained to do for him. It takes about 45 minutes to do plus another 10 minutes to wrap his leg in the compression bandages. If he wears his stockings religiously, there isn't the need for the manual drainage or the wrapping except occasionally.
As my husband's PD progressed, with some dementia, he often cheated on wearing his stocking. He would get himself dressed and not put it on. Even when I noticed it wasn't on he wouldn't wear it. Finally, his leg would become so swollen with lymph fluid that he could hardly walk. In the past it had gotten so bad that the skin on his foot actually split and lymph fluid seeped out! Infection, gangrene, amputation can all result from this level of neglect so it made me CRAZY trying to keep his leg in good shape. When he let his leg get bad it fell on ME to make it better because I am the one who has to do the massage and bandaging. It takes about 2 weeks of work, at an hour a day, to undo 2 days without wearing his stocking. As a caregiver, I already had enough to do for him, without him making more caregiving duties for me! I really, really begrudged him doing this.
I ranted and raved. I cajoled and complained. I became The Stocking Police. Finally, I realized that his wearing of the stocking (or not) had made me into someone I never wanted to become: A bitter nag. I hated how the wearing of the stocking changed the fundamental way we related to one another.
Finally, I told him I would not do it any more...he could wear the darn thing or not and take the consequences of his actions even if it were detrimental to his health. Guess what? He started to wear it all the time. But, I was also prepared to live with what would happen if he didn't ever wear it again.
The odd thing is that my husband is a very considerate man. So, this behavior was very inconsistent with the basic nature of who he is/was. He used to be fastidious in his hygiene and dress but that has totally changed too. I have wondered if the PD changes the thinking pathways of the brain? Or is it dementia that makes for bad decision making? Now, he has become so incapacitated that he can no longer dress himself so putting on the compression stocking is just part of getting him dressed. He no longer has the option to "opt out" of wearing it. Ironically, his leg is now in good shape but he has declined drastically. Just so sad all around.
Be true to who YOU are. Don't let his decisions change you into someone you don't want to be. My heart goes out to you. Lots of support coming your way from this camp.

© · Published by jAess Media · Privacy Policy & Terms of Use
Sponsorship Assistance for this website and Forum has been provided by
by people like you