For those who care for someone with Parkinson's disease
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| We are really having challenges now with our family understanding the dynamics of the Parkinsons and the impact it has upon our lives and our ability to do the things we once did. Now there is some animosity towards us and I really want to address it but just not sure how to approach it. My idea is to call a "family meeting" to get everyone together, to hear everyone's thoughts and feelings about where they are at with their relationships with their father and I. And perhaps to have the opportunity to explain ourselves in a more compassionate way, letting them know we understand their confusion or their concerns but also to let them know where our limits are now and the truth about what is happening. I find this very painful knowing that everyone is upset with us because we no longer go out to visit them at Christmas because sometimes, quite honestly, we are just plain too tired and exhausted getting ready for the big day. I was not well for weeks before Christmas so did not have the stamina to shop for gifts like I normally would. I know part of it is my guilt but there is absolutely anger directed at us for not going out. It is more challenging because we are a blended family and the dynamics are a little more disruptive because of the divorces etc. Has anyone had any experience with holding a family meeting and any feedback about how I could go about this and be successful at it. I don't want the children feeling hurt because we haven't explained things clearly or they have misinterpreted a situation or ............. I think that the Parkinsons is now at a point where I need to do this because it really is disrupting things for all of us. |
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Gosh, I am soooo new to this, but how i relate.Also a blended family, At Christmas my daughter and Son in law, and my partners Son and his wife, has an unplanned meeting such as you wish to have. My partner was in bed ( He has PD). Memebrs of his family think i should stay home and look after him.( but dare i say this out loud...)I would not trust myself if i was with him all day. he is like a stranger and very nasty,I am sure i would end up saying things i should not say.) which bless him, he never was, he was always such a gentle man.I am quite at my wits end, and really tired, he has spend three nights up all night and manic. We hope this will go now that steriod has been stopped. I think you should have your meeting, dont get into trying to get others to see it your way, i found just saying i found it interesting to hear what they think, but then letting them know the reality of what PD is....a lot more than someone who shakes. Good luck |
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I would go ahead and have a meeting. Our family would love if my folks were open about my father's condition. If you aren't open and upfront about the reality of how hard your lives have become, how can they be anything but angry if you don't do the things you always did? We would be happy to change holidays, do more driving, help with dr. visits, and just plain be less angry at them, but my folks will not share any info with us.... My father is a difficult man to manage, and my mother is probably at her wits end, but we need them to ask us for help---at this point we just waiting for an emergency to happen, and then we are allowed to step in. At some point we are going to ask the VA or social services to step in and help us with a meeting. |
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I think it is hard for those whose relatives have PD but who aren't with them all the time to understand the extent of the impact it can have. You know your family best - but a kind of family meeting could be construed as disloyal, and depending on family members, could turn nasty. Several factors: - "showtime" - or the ability of the person with PD to act "normal" for a time, especially in public - the inherent variability of symptoms - the desire on the part of family members to feel their loved one hasn't changed, is just the same - sometimes it's denial, sometimes just not seeing the changed that are so evident when you live with them. To the extent your husband can communicate rather than you, it would have more credibility. If he's like many persons with PD, he may be reluctant to disclose any effects - and may not willing to discuss some sensitive issues, or may even be unaware of them himself. If you communicate "behind his back" there's a good chance you'll be cast as the wicked witch. It can also take a while for family members to believe changes are taking place - they don't see, or don't believe them. Family support would be so very helpful, so it's worth an effort to try to enlist it. Maybe you could try publications from the Parkinson's Disease Foundation - see, eg, http://www.pdf.org/en/caregiving_fam_issues and http://www.pdf.org/en/factsheets Since these are from an authoritative, neutral source (you could download them and e-mail them to family members, or direct them to those URL's) - they might get delicate issues across better than you can do. And e-mail might give them a chance to absorb the info, rather than having to react at a family meeting, when their response might be denial, refusal to believe, and blaming the bearer of bad tidings. It's hard. I don't know the answer - but consider communicating in stages, consistently, and perhaps using neutral sources to do the unpleasant work for you. Also consider that in a family meeting, dynamics between family members can get complicated - eg, brothers and sisters competing to be the most loved or loving, or to deny there's a problem so they won't be responsible. If your communications are one on one with family members, there may be a better chance for the focus to be on the needs of the loved one with PD and your needs, as primary caregiver. I wish you the best. |
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| Thank you everyone for your insights. I am definitely reconsidering the "family" meeting idea. Your points are well taken and it may not be the best route to go considering all factors for each and every one of us. I shall forward the excerpts from the websites to some and perhaps with others we (hubby and I) will sit down and talk to them together. He can take part in the conversations. I will also jot down the suggestions from each of you and ellaborate on them to myself before going into the conversations. I sincerely appreciate all of your responses and feel very grateful to be a part of the forum. What a God send for all of us. Blessings to all. |
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| Thank you, Reflection for the site details. Very helpful indeed. |
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I'll add this: I told my dad about how hard having PD in the family was and he totally didn't understand it until he came to stay with us for an extended visit. The good side is that he GETS it now, he sees how hard it is for everyone. The bad side is that as my father, he is now very stressed by how hard he realizes this is on me, the caregiver, wife, parent handling all aspects of child-raising, etc. I am glad he gets it now, but wish he didn't have the stress of worrying about me coping and handling everything. My PD spouse's family, I cannot imagine having a meeting with them. Talk about waste of breath, I only forsee disappointment coming from that. But every family is different, and I know families where open and honest communication in this situation would actually be a good thing. Have you considered getting a counselor to mediate the meeting-one well experienced with PD? If I were going to have such a meeting, I would certainly consider having such a counselor present, as a sort of mediator, to facillitate a successful meeting. |
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| Good information. Thanks all for sharing. I can relate as well. My spouse's kids did not even call my spouse on Christmas to wish Merry Christmas. No gifts brought by (for their dad). He can no longer buy gifts for them as he doesn't get out much. I had one of the kids tell me (grown kids) once when I suggested we draw names to simplify matters, "This is my dad and I'll buy him gifts every year if I want to!" It is difficult to deal with volatile family members and I tend to just ignore them because I have my hands full and don't have time for pettiness in the family due to lack of knowledge of the disease. People have to WANT to be educated and many don't want to be... Sad, but true. |