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By hotlyn On 2017.03.29 07:20
Hi my name is Lynne , hubbys name is Tony and we are in Melbourne Australia. Tony was misdiagnosed with essential tremor 6 years with tremor in right hand and left leg at age 64. As time went by I felt there was more to his symptoms but neurologist didn't agree . So last Nov 2016 after waiting 9 months saw professor at Movement Disorder Clinic who told us in 5 mins he had PD. So while it was good to get the right dx it was still a big shock . Too be honest I'm still struggling with it. He is on 600 mg Kinson daily which has stopped his tremors but his memory is going fast . So to outsiders he still presents as "normal ". He retired 2 years ago and now is happy to sit at home all day and watch tv.
I still work part time( luckily from home) , have an elderly mother I care for and mind grandsons several times a week ( before or after school ) . we are a blended family ( married 16 years ) . We told all the adult kids in Nov and only my youngest daughter "gets it" , we or rather I mind her children . None of the others have expressed any interest or concern !!! They ring ( never visit ) , how are you dad, he says fine and that's that! So my question is ... In a couple of weeks there is a family birthday party in his family .. Everyone will be present . I am wanting to get his 3 children together and really tell them like it is. That if they want to build memories with their father they better get in and do it soon because in 5 years time he won't know who they are !! That the monthly phone call isn't enough . They all live within an hours drive. How do I nicely do it with out doing my lolly .. Ang suggestions ??? Thanks
PS, just wanted to say have read the past 25 pages on this site , have learnt so much , thank you

By jcoff012 On 2017.03.29 12:42
Hi, Lynne! Welcome. You are here with a great group of caregivers who truly understand.

From personal experience, I can tell you that our kids are much like yours...one "gets" it...the other two don't. It is sad, because I know they adore their Dad. Maybe that is the problem...they cannot see him as less than perfect and LOSING him is not even in the picture. It is sad because just the other day our oldest daughter posted three pictures of Christmas 2014 and captioned it, "I miss my family." He "liked" it and said, "I miss my family, too." So very sad.

Not to discourage you, but being honest, I am not convinced speaking to them as honestly as you want will help. I have tried. I have called, texted, messaged online...they call or come at their own pace. I think, again, they don't "get" it. I always "blame" MJFox because he has put a youthful face on PD and is still vital to their untrained eyes.

I hope you can somehow help them stay active in his life...and yours...you will need support from family. Good luck on your PD journey.

By Mary556 On 2017.03.29 20:56
Good Day, Lynne and Tony. Peace be with you.
I think it might be best to go to the family party with no expectations, just have a good visit with everyone and focus on making it a happy day. Personally, I would not say anything to his children that would imply there is a lack of concern or that they are not doing enough. By all means, it would be good to extend individual invitations to each of them... say something like "We would be so happy if you could come for a visit, just for an hour or two?" Find out what is a good day of the week for them and for you, get out your calendar and try to set up a specific date. Hope they will respond. I would try not to push them or say anything to make them feel guilty. If they have not seen their father in awhile, they may notice the changes from his meds, his loss of memory as you have described. If someone asks you how he has been, you can answer honestly. They may need more time to get on the same page. If they are not ready to hear what you want to convey (that precious time is running out), I believe it could backfire to tell them outright... especially if your DH does not consent to that conversation.

It can take time to adjust to a dx of PD, for the PWP and for loved ones. Denial is one of the first stages of grieving a loss. While your husband is still processing everything, he may want to keep his same routines and sense of "normalcy". He might not want special attention or extra visitors outside of their usual phone calls. You could ask him that before you invite them over? If his children call and he says he is "fine" maybe that is his way of choosing not to talk about his illness any more than that right now, or maybe he really is fine (or as well as can be at the moment).

You are an amazing caregiver of three generations of your loved ones! You deeply care about your husband and your family and want the best for everyone.
We are all in different situations. For myself I've been trying to let others go at their own pace and just try to accept each person in the place where they are. I believe that conflicts could arise among family members when we are in different phases of grieving. One who is in an anger phase may not understand one who is in sadness or denial. You and your daughter may be at a stage of acceptance and understanding because you are around your husband day-by-day and know him more personally as he is now.

I've been reading some books by Maggie Callanan the last year or two, mostly about caring for someone as they are nearing end-of-earthly-life. As a hospice nurse she has learned that denial is sometimes a coping mechanism, something the ill or dying person may need as a crutch; it can give them a reason not to give up. Her advice is not to take denial away from the person unless you can give them something better to replace it.

Best wishes and prayers for you and yours.

p.s. Oz expressions make me smile. Someday please tell us non-Aussies what is the translation of "doing one's lolly"?? I'm going wonky here trying to figure that out. :)

By lurkingforacure On 2017.03.29 22:00
I echo what others have said. We get the "hi how are you" and "let me know if you need anything" but that's about it. I used to get really upset by this but not any more. I know it's hard to see your brother/uncle/cousin/friend, etc. decline, and not everyone can handle it as well as we would like...or at all! We face and handle it because we HAVE to: no one else does.

Trying to make someone understand or get PD just doesn't work. They may not want to see, because it is too painful for them, they may be selfish and don't want the guilt of not spending time with the PWP, etc. Whatever the reason, I think we have to let family come to "get" the PD of our loved on on his or her own terms. Tell them they need to make memories now, tell them today might be the last good day he has for a month or more, whatever, but know that no matter what you say, that person will need to process things on their own terms and in their own time. It may never happen for some.

We all have to make peace with how we treat others, and I have realized that is a very individual thing.

By LOHENGR1N On 2017.03.29 23:42
Hi Lyn and welcome to the forum. If I can add my two cents worth to the wonderful advice you have already been given? We Parkinson's patients tend to try and do everything when we are "on" when med's are working best. We can be self conscious in the best of times thinking everyone see's our tremor or gait problems, our unsteady walk and slow movement. Over time and the course of the disease we become forced to function in public more and more during times the med's are not working well. This is to our detriment. People see us only when at our best and not when it is bad. If you are inviting the children over try to maybe get them there at a time when the medicine is waning? They will see the best and then still be there to see the cutting out of medicine and how much of a difference between the two. Hopefully it will spark a conversation one that through their witnessing themselves the difference and that it happens several times a day. Hopefully they will become involved and interested in helping. Just a thought and as was said if they do become more involved it will be in or on terms they are comfortable with as they process the information.

By VioletV On 2017.03.31 11:43
Hi Lynne,
Lots of good comments here (and welcome!).
I just want to add that when people ask how you are, you can educate them about the changes by telling them how YOU are adjusting to them. For example. "We're ok, but there are times that I struggle to understand that he just doesn't always remember who I am -- I try hard to have good days and good experiences when we can." I think that strategy educates them without shaming them.

By Trusting On 2017.04.02 18:21
I think part of the problem with others is they think PD is "just tremors", I know that's what I thought before watching my husband and doing some research. I think they think the person with PD is going to shake a little and it's no big deal. I guess we need to get people educated on this disease. Do the children even realize it will affect your husbands brain, organs, and more? My kids are just now beginning to understand the seriousness of the disease and my husband has had this for about 10-15 years. Blessings to you.

By moonswife On 2017.04.02 20:37
Hi Lynne. Welcome.
Our husbands have a similar fairly unique description of their beginnings of PD. 20+ years ago my husband was told he had essential tremor. Within 10 years he was also diagnosed with PD, and the neuro said that some people never have anything but ET, but in a few cases the PD catches up and was hiding back there all the time. DBS took care of the tremor, and Rx have managed the disease fairly well. Same old issues of pills wearing off at odd times. Usually when he has a cold, or the MRSA has found a wound to infect. Then all hell breaks loose. It usually manifests in fall, and that is MY first clue to hike to the ER. Never been wrong yet, they always keep him. Other progression has been impatience, a little confusion...and then he up and kills at our cut throat Sunday night scrabble tourney. Go Figure?? I have a daughter that "gets" it and a 7 year old granddaughter here at the house too. She probably gets it the best. Our son has verbalized to family that it bothers him to see his Dad, and is uncomfortable around him. He got a full taste of a meltdown in the hospital one time when Mike took out his IV ....twice in 10 minutes, and then ripped his indwelling cath out...producing copious blood. Now he "gets" it...but wants no part of the stress. A hug to you in your lowest moments, Lynne. Justine

By hotlyn On 2017.04.04 06:29
Thank you everyone. To Mary first ..,to do your lolly means to loose your temper !!! I've read and re read everyone's comments . I really appreciate everyone taking time to write their thoughts about where I'm at now. The family get together is this Saturday and I've decided if I get a chance I'm going to get the three of them together and explain the situation to them as it is at the moment, explain if they want to build memories with their dad they better do it now . If for whatever reason they can't make an agreed day/ time for visit to please ring : txt their dad . Son ( age 40) and wife just didn't turn up Xmas day . No phone call / no txt !!!
Tony got so anxious . I got the job of calming him down . Of course ! I know it probably won't go down well. But it's my nature ... Say it and be done with it. Won't mention it again . I just think well I've done my bit regarding him and his kids . I can go on with Tony knowing I tried . Sooo I'll get back to you all after the weekend . Wish me luck .


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