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Topic I think they are in trouble... Go to previous topic Go to next topic Go to higher level

By fathersdaughter On 2011.10.04 21:11
I am an adult child of a father with PD.

Since my father's diagnosis 9 years ago at 60, I have respected the life choices my parents are making: they have a right to have life the way they want it!

When I ask how can I help, they never want/need anything from me. And when they do want help, they are always handing me gifts in return (even when I say specifically that I simply want to help!!) It doesn't make sense.

Lately, my mom has recently become very brittle and harsh. She has even told us (in an email) that they will not attend any gathering we arrange to celebrate their 30th wedding anniversary because we are only planning something because we are afraid that my dad won't be here for their 40th.

Since we have now seen a pattern in her behavior, we are choosing to believe that she is angry and hurting rather than brittle and bitchy. I would be (angry, hurt, confused) if I were her. The love of her life is in increasingly constant pain and suffering depression - this is not what she thought retirement would be!

I love her and my dad with all my heart - and I wish she would confide in me.

As adult children, we want to be of service and helpful, but are trying very hard to respect the independence our parents have always had. Plus, as my dad's situation is increasingly deteriorating, I don't want to do anything AT ALL to upset my mom. But I can't stand that she's pushing us away when she needs us most.

Any suggestions?

By karolinakitty On 2011.10.04 21:36
I just posted the 36-hour day...about caregivers..in there was a note that sometimes we(caregivers) look at "help" as failure. That we somehow failed to take care of the one we love if we ask for help or receive help.

Your mother seems to be overwhelmed with everything and most here can relate to that. Even though you are offering she still may feel alone in this as it is "her" husband, "her" responsibility to take care of him in this time.

Your father and your mother both may be apprehensive about being social by having this party. Many Parkies are self conscious about their disease and social events are a struggle for them. Plus there may be issues that have come up that your mother and father would prefer you not know. If you know about PD then I think you can understand the issues I am speaking of. He, like most, may not be able to sit for a long period of time, may not "Eat" as social graces say. These are things that make social activities a bit overwhelming.

Is she angry and hurting...probably...none of us thought our lives would be what they are. But here we are, fighting a disease with our loved one, trying our hardest to get through life the best we know how. Some may need a little encouragement, a little extra love....
How about a night on the town with your mom while someone else stays with dad....Surprise her....go over for a visit with the intention that someone will stay with dad while you take mom to a movie or something....OR...take dad somewhere, and leave her to herself....sometimes the best medicine is a quiet house and a nap!!!!!

Think outside the box.....don't "ask" if they need help....just do.....
listen to her talk...really listen... she is probably letting you know what she wants or needs in an indirect way...listen to her bitching...there's something in there that she is crying out for.......

By parkinit On 2011.10.04 22:34
I would add that it is important to get to know the disease so you will better understand their behavior and symptoms your dad may be experiencing. I agree with the above post - caregivers are exhausted. Giving them a break is the best offer you can give your mom.

By fathersdaughter On 2011.10.04 22:47
parkinit and karolinakitty;

THANK YOU.

What I didn't say was that, given the economy, we are in fact, not planning a big 30th party for them. Plus, we are conscious that big events are tough for my (young) dad, who, at 69 and 9 years into his PD, is constantly sore and tires easily.

I will do more to get to know the disease; I promise. Dad has been not wanting to talk about it at all - and respecting that, we have limited our engagement with PD resources. Today, I attended my first PD support group meeting.

Three questions:
1. What if neither of them seems to want a break ("no thank you")? Can we just do it anyway? Is that appropriate?

2. I have regular visits with my dad. We're having breakfast together tomorrow. Do I talk with him about this change in mom's behavior or not? [He always changes the subject to something important to him (he's written a book that I've been helping him with and that's what he likes to talk about).]

3. I used to have regular lunch visits and go swimming with my mom. But she got so bitchy and said she didn't want to spend time with me. I'm an adult, so I tried to be grown up about that, and it did hurt. I think i didn't recognize a cry for help then. How do I make it right? We still talk, but it's very different - it feels like she's disregarded me and doesn't want any support or help from me at all.

appreciate your advice because you know...

By LOHENGR1N On 2011.10.05 00:05
If I may add My two cents worth of advice. I'm looking at this as a Parent with Parkinson's Disease and through my own experience with My adult Children. While most of my experience differs from your parents. I was 33 when diagnosed and my children were young. With all the good intentions in the world you respected the life choices your parents were making. You used to have lunch and swim with your Mom.

Ok this sounds like while not meaning to by letting them make decisions on their own not wanting to interfere they perceived it as your withdrawing and abandoning them in mid crisis. Maybe not but likely. I'm sure they welcome your interest now in helping but it will be awkw,ard at first. I know my response to my Children's interest was about time, better late than never. Along with some resentment about how long it was in coming. However if I can caution You? Learning about Parkinson's Disease is crucial but don't read and then tell. Meaning They might take offence at the johnny come lately expert. At first ask them to teach you about the disease. Let them feel helpful in educating you on their life. My eldest Daughter when She took interest was coming up with online info that some was good some had been misinformation written 15 to 20 years ago and still circulating. Have Your Mom and Dad teach you about His limitations so you don't suggest something that His present condition doesn't already preclude doing. If you haven't told them about attending a support group yet hold off telling them. While it shows interest in might spark resentment as no one can tell you better than they can about their life with Parkinson's Disease.

Welcome to the forum, keep posting all here will gladly try to help anyway we can. Take care, best of luck and hang in there.

By susger8 On 2011.10.05 07:40
When it looked to me as if my dad was getting to the point of not being able to handle some of his activities any more, I offered to help but he said he didn't need help. I got pretty pushy about it, which is not my usual style, but I really thought he was having problems. (Mainly in dealing with the mail and bills at that point, but as I got more into things, I saw that he also was living in unsanitary conditions, not taking his meds regularly, and not keeping up with doctor appointments.)

I started by coming over once a week to clean his kitchen and bathrooms, check through his mail and bills, and go with him to get groceries. Gradually I took over more of his activities. It was more acceptable when I "started small."

This might not work for other people. But starting with small things to help might make it easier to accept.

Sue

By fathersdaughter On 2011.10.05 11:56
Thank you so much for the advice and suggestions.

And especially for being so generous and contributing from your perspective as a parent with PD who experienced their children's late engagement in a particular way. Perception is everything sometimes.

I think I'm hearing that the best thing I can do is get visibly and audibly interested in his experience of PD, let her know that I think it's time for me to insert myself and gain her permission to do so by doing more small things (more than yard work, more than administrative things) like taking her out for lunch again, no matter what.

I won't mention about attending the support group, or that I picked up the book "Parkinson's Disease for Dummies". I'll get what i can from those resources but focus on learning more about his PD precisely.

Years ago, on his invitation, we all read Michael J. Fox's books - and we still use reference points from those books in conversations with him.

Huge gratitude to all of you who have replied so far.

By parkinit On 2011.10.09 10:53
If there is a "we don't need help" attitude, perhaps this is from years of "just doing it." As Al suggested, start allowing your mom "breaks" and this also gives you a chance to visit with your dad. She sounds totally exhausted to me - does it seem that way to you? If that may be the case, then suggest that you are coming to spend time with your dad on a regular basis and she can go out with friends, grocery shop, run errands, etc. That it is her time to do with whatever she wants. Most importantly, make this time with your father on a regular basis so she knows she can count on this time for some relief. My spouse has a friend who comes over once a week and it is such a blessing to both of us.

Also, I don't want to alarm you, but could it be possible that your mom may be suffering from dementia? Dementia makes one easily irritable, agitated. In the mask of HIS disease, perhaps, her health needs to be observed as well. Read up on dementia, begin observing your mom for signs (without here knowledge of course). If there are other siblings, you should discuss with them if this is a suspicion or possibility.

Best of luck to you and bless you for caring and trying to understand and help.

By lvmymom On 2011.10.09 16:19
All posters have offered some wonderful insights and it appears you're willing and anxious to learn. I agree with all.
Continue with what you've already learned, but maybe contemplate one more suggestion:
Instead of taking your mother out, which may seem like effort for her, so she says NO to you...
maybe instead she'd like to get your dad out of the house so she can have some peace and quiet. Sometimes that is hard to admit.

Maybe you can ask your dad to your house each weekend for 4 or 5 hours so he can get some fresh air and be around you and your family. And maybe you can take him out to dinner one night a week, giving your mom some more time to herself. If she questions why, you can simply say you want some time with your father.

THEN as she gets use to you being around, you can start asking her to lunch once in a while. Let her know you miss your one on one time with her as well.

One last thing - you may offer to drive them both to their doctors' appointments. Helping with the wheel chair, getting in and out of the car, driving and making it easier for the late 60 year olds, is something they'd both appreciate. This way you can sit in on the doctors appointments with them and will learn more about their situation - become a part of the "whole" ....

Good luck...

I especially liked the suggestion that you ask your parents to teach you about what is going on. Good advice!

Oh! I was also thinking ...You can tell your mother about this forum ... maybe she'd like to vent and learn and feel better knowing that she is not alone by becoming a part of this valuable "family".

J.


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