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sarakay

Dealing with family

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hi,

Does anyone have the problem of dealing with adult children who have really back off from having anything to do with their dad who has PD? One child calls but we have not seen him in 6 weeks. The other does not call, email or correspond in any way in the last six weeks. one is an hour away the other is two hours away in the same state. We know they are busy, have full time jobs and marriages. But surely they could visit or at least call. I have asked them to do this. I don't know what else to do. Any suggestion?

  

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Did the children visit or call more often before their father was dx w/ Parkinson's disease?  If so, they might be having trouble facing the reality of the situation.  If this behavior has been typical throughout their adult years, I wouldn't expect it to change just because their father has a serious condition.  If Dad is able, he may have to reach out to them (i.e., call or visit more often).     

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My brother lives out of the country.  He hasn't seen our mother in over 5 years.  He hasn't called either.  Just as well.  My mom has dementia with PD so he can't talk to her on the phone even though he could call and ask me how she's doing at least but doesn't. My aunts and uncles are distant as well but hey it is what it is.  A lot of people shy away from sick people.  We deal with it first hand so we are more sensitive to this issue.  I wish I can shake my brother and tell him to wake up and be a better son but it's not going to happen.  He has a teenage daughter and one day this may probably happen to him.  I see it as circle of life and karma.

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hi miracle seeker and other kind replyer,

yes our kids kept in touch regularly and we saw them often for birthdays, holidays and vacations. our daughter has a 14 year old who we helped raise for the first 3 years of her life. when the family moved to AZ my heart was broken so i got a job as a caregiver taking care of elderly people. After 4 years they moved back to IN to be closer to us just about the time my dh was showing signs of something being wrong 6 years ago. We saw a lot of them the first 3 years but as his condition has worsened the contact has been less and less.

Our son is much better at calling. But he is newly married and madly in love so he doesn't have time to see us. 

My daughter is angry at me and even though i have written 4 letters of apology she has not called or replied. we have invited them all for dinner here sometime during the thanksgiving week at their convenience but no reply so far except from our son who reminded me that he and his sweetie are going to argentina for their honeymoon that week.

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I can relate to this topic.I have PD and also two sons.I like the observation about how just having a disease would change a persons behavior.

Recently I posted a whay ever happened to honor they father and mother.It realy bothered me that my sons "seemed to avoid me"Even thought about financial consequenes.

Yesterday was Halloween and my wife and I went to see them .I started to have back pain but decided to take a few advil and tough it out.The visits went well with no argument and no regret.

I learned I must not think I can control others behavior.

My sons do now show concern and maturity.probabily better at it now than when I was young and indifferent.

No lack of visiting is worth getting yourself upset over.We have to deal with a constantly changing disease,Thats enough now for me.

There is a problem today which would greatly improve morale in families.Dr. Low talks about novelties and how they interfere with fellowship.

Now what do we have today that we would call a novelty.lol

:-P :razz: :-P

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It look like you have reconciled with your sons? Its nice that you can still go out and travel to see them. it is getting harder and harder for my husband to travel. his balance is not good. he cognition is impared. he is much more comfortable at home and truthfully so am i. being social is no fun when he is simply ignored most of the time. it's hurtful for me to see this. i think i mind more than he does. but i don't know how he is really feeling about much. he doesn't seem to be able to find the words to tell me how he is doing.

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My mother has PD and I think some of the avoidance is the inability to handle a serious illness and to face mortality. My siblings are less hands on with my mother but after I spoke to them, they did make more of an effort. At least, I felt I could actually talk to them. I grew up with my grandparents, so I've seen the effect of aging and loss of mobility first hand, which perhaps make me a little more able to face things more head on. However, it is draining and my friendships have suffered.

 

I would speak frankly to each of your family members and about how their visits/calls would not only lift their dad's spirits but yours as well. I told my siblings I felt alone and they were more understanding after that.

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I have PD and since the dx my children have avoided me...and none of them call to see how we are. It is denial.....and it hurts....but it is what it is. I am planning ahead to avoid ever having to ask for their assistance.

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Adult children often don't show sympathy because their temperament is dull or unreactive.A healthy temperament is reactive to others in positive feelings.I have found in the past when I lacked emotional skills  my temperament was also dull and unreactive.Its a lot better now that I have my tempers in check and avoid expressing them.Express feelings but suppress temper.

Families would be a lot healthier emotionaly if nervous health was made available to them and of course they used it.

Usualy a sign of this is one who makes big issues out of trivial and make important  events trivial.A overractive nervous system oftens causes this.

Some in my family do not see the value of this.But that is also very average..All these issues with others are of course outer enviroment and we soon learn we can't control the outer enviroment,.

One of Dr.Abraham lows good spots for this .It is a sign of lack of character to not show sympathy to a distressed family member.

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It seems that in my world, as my DH's symptoms get worse the other people hardly see him anymore - as if he were invisible. People look at me when they ask him questions, and even our grown kids just say hello or goodbye but the conversations are with me.

 

I don't know if it is fear, not knowing what to say or do, or just a stronger need to get on with their own lives! PD is no fun!

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Hmmmmmm, not spending holidays with family for the first time..but they all live over 3,000 miles away. It is what it is...there is collateral damage with PD.......another transition....acceptance.....gratitude....and moving on....I surely will not anticipate anyone taking responsibility for my care if my husband is not with me.....and will plan accordingly.

 

I have very great kids...productive...caring...empathetic....just like,their dad.....they are super busy with families and careers...I don't want them to adjust their lives....no expectations.....a phone call might b nice....

 

"Cat's in the cradle with the silver spoon

Little boy blue in the light of the moon

When ya comin home, son,

I don't know when,

But we'll get together, then, dad...

We're gonna have a good time then..........""

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Hmmmmmm, not spending holidays with family for the first time..but they all live over 3,000 miles away. It is what it is...there is collateral damage with PD.......another transition....acceptance.....gratitude....and moving on....I surely will not anticipate anyone taking responsibility for my care if my husband is not with me.....and will plan accordingly.

 

I have very great kids...productive...caring...empathetic....just like,their dad.....they are super busy with families and careers...I don't want them to adjust their lives....no expectations.....a phone call might b nice....

 

"Cat's in the cradle with the silver spoon

Little boy blue in the light of the moon

When ya comin home, son,

I don't know when,

But we'll get together, then, dad...

We're gonna have a good time then..........""

 

Julie, this has become a lament for many parents.  I've both read and heard that.  Take comfort in knowing they love you, but that circumstances do change.  It is truly really hard. 

 

My family gets together the Saturday before Christmas because it's when several of the out-of-towners can make it.  It's every bit as special as if it were Christmas Day, just because we get to be together.  There is still one nephew and his family who live too far to make it, but we try to skype him in.  I used to have the family here in my  home every year for a traditional turkey dinner with all the trimmings, but I haven't been able to do it the past 3 or so years.  It's been really hard to let it go.  My brother had told me that it was always the highlight of their year, which touched me deeply and made it extra hard that I couldn't do it any more.  This year we're making it a very casual dinner at my brother's  home.  I so look forward to being with everyone.

 

When traditions change, it's sometimes helpful to start new ones.  Have you considered (if you are up to it), maybe having a Christmas dinner with people who may not have a place to go, like military?  Or foreign students who can't go back home and would otherwise be alone?  I've sometimes included people like that, and I've seen others do it. They would be incredibly grateful, and I think you would be very pleased at having helped them.  Just a thought, as I know you may not be up to it.  :-)

Edited by Linda Garren

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It look like you have reconciled with your sons? Its nice that you can still go out and travel to see them. it is getting harder and harder for my husband to travel. his balance is not good. he cognition is impared. he is much more comfortable at home and truthfully so am i. being social is no fun when he is simply ignored most of the time. it's hurtful for me to see this. i think i mind more than he does. but i don't know how he is really feeling about much. he doesn't seem to be able to find the words to tell me how he is doing. How awfully hard that must be, both for him and for you. I'm so sorry.  Gosh this illness is no fun.

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With the changes and progression of this disease being close with my family, especially my adult children, is so important to me.  We are spread out but close enough to see each other several times a year.  I feel bad because I can no longer manage having house guests like I used to but they are slowly accepting the changes and handling them fairly well. 

 

My biggest challenge is my husband's denial of what is happening.  He cannot bring himself to deal with planning for our future and, although he is a good listener when I need to talk, he doesn't contribute much to the conversation when it concerns planning for our future.  How are others dealing with this problem? 

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Gardener, my Dad was the same way,  He wouldn't talk about it when I'd bring the subject up (and he was near 90), so I finally asked him if he just wanted my brother and me to take care of it.  And that's what we did.  I think the issue is so incomprehensible to people sometimes--especially as they age--that they just stay in denial.  What we did involve him with, of course, was talking with his financial planner.  But we helped him look at assisted living facilities (and in the end choosing the one for him), took over paying his bills,prepared his house for sale and hired a realtor.  Everything went along very smoothly.  I think if you can get your husband's agreement and let him know what you think might be best to do, that might be a way to go.  Involving your children by having a meeting to plan and communicate and work together would be essential so that you don't go it alone.

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Gardener,

I have the same problem. We can't talk about any of this so I just go ahead and plan. I don't tell her some of the things I am

doing since she has no clue about reality and the future. She just says we have to trust and then goes and spends money. It is

so hard that way. the intimacy is gone, emotional and physical to a large degree. I am married to Pollyanna and there are real

not imagined things in the future to deal with.

Coach T

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Coacht, I am in the same place! My hubby is in almost complete denial. Breakfast will only take 15 minutes! Yeah, right more like at least an hour. He's going to fix everything - so I end up doing it. I can't tell him all the things I control, because he's still the boss! Companionship? Intimacy? What's that? In my world, Pollyanna ran away.

 

I just keep reminding myself that this is a different phase of my life - one that I sure didn't expect, but it's what I have to deal with. If I could improve my sense of off-beat humor and laugh at more things it would be better, but I'm not there yet.

 

Linda

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I have 3 older brothers who visit my mom in varying frequency -- one almost every week, one maybe every other month, and one a couple of times a year.  What I find is that for the hour or two that they visit, my mom is pretty good partly I think because she enjoys seeing a new face.  What they don't experience though are the bad times like when she freezes and can't feed herself.  So I sometimes think they don't really understand the toll the disease takes and how much having a visitor really means to her.  And when they do visit, she doesn't express that she is happy for the visit because she can't always communicate but I know she appreciates it.

 

Regarding planning ahead, I can sympathize with those who have a spouse who doesn't seem to want to face what the future will bring.  My dad has been that way especially when it comes to their house.  They should have moved to a smaller house (and one that is more handicap accessible) years ago but he just couldn't bear the thought of moving out of the house they've been in for 50+ years.  Now that my mom has developed dementia, I don't think it would be wise for them to move because I think she would be completely confused.  I wish someone (maybe a doc) would have had a frank discussion with my parents years ago about what to expect and plan for as the disease progressed.  Too bad people don't seem to want to have those conversations.....

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I see that this issue of spouse denial is common.  I love my husband and would never actually do this, but I often think it would be easier if I was alone and could just go ahead and make these decisions.  It's hard to move a household, make financial planning changes, and talk with the kids about the future care of their ailing parent without both spouses onboard. My husband's take on this is:  we all grow old, get sick or have an accident and die - why not let the PD run its course and when it's obvious that we can no longer handle the situation, we'll do what we have to do.  He might have a point here, but I fear, as desperate said so well, we won't be able to change our situation if we wait too much longer.  (He is 70.)  Thanks for listening.  Gardener

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I hope u all saw my post re: financial planning.. I will repeat..forgive me...I found that in the state of WA one can create a medical trust with their spouse.....if one dies, his portion of the estate is reserved in a trust where the money can not be considered when govt is evaluating the medical needs of the surviving spouse.

 

The advantage is your resources can be kept longer...you always have access for other things than medical...all long as the $ is used for the survivor's best interest.

 

I am not a lawyer, but it may be valuable to some of you..states of course have different laws.

 

I appreciate ur site..but will skip out for awhile......best of luck to all of you...Elle, my heart aches for you....hang in there...

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Gardener,  have you considered putting a deposit down with a continuing care facility so that you can get on their waiting list?  It's fully refundable if you decide not to go.  But for good places, it can take some time for apartments/condos to open up.  They will call when the kind you want is available, and every one I've looked into has said you can turn them down if you're not ready and not lose your place on the waiting list, and they'll call again when another opens up.  It's like insurance. 

 

Another thought might be to sit with a financial planner or doctor or someone who can be an objective third party and whom your husband might "hear" as to the need to plan ahead.  Do you know what I mean? 

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I hope u all saw my post re: financial planning.. I will repeat..forgive me...I found that in the state of WA one can create a medical trust with their spouse.....if one dies, his portion of the estate is reserved in a trust where the money can not be considered when govt is evaluating the medical needs of the surviving spouse.

 

The advantage is your resources can be kept longer...you always have access for other things than medical...all long as the $ is used for the survivor's best interest.

 

I am not a lawyer, but it may be valuable to some of you..states of course have different laws.

 

I appreciate ur site..but will skip out for awhile......best of luck to all of you...Elle, my heart aches for you....hang in there...

 

NN, Maryland has the same law, which can apply to spouse, and then to children if spouse dies.  I think the trust cannot be taxed, as well, if my  memory serves me correctly.

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Thank you, Linda - very good suggestions.  I wondered about preplanning for an independent living situation as I think that is what I would want if my husband should go before I do. 

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Thank you, Linda - very good suggestions.  I wondered about preplanning for an independent living situation as I think that is what I would want if my husband should go before I do. 

 

You may find that upon locating a continuing care community which includes independent living, visiting it with your husband a few times may help him understand how happy people are that they moved there and wondered why they didn't do it sooner.  So many say that.  :-)  Helping him become familiar with the atmosphere could make a big difference in how he feels about taking the step.  One big draw would be how much is taken care of, like snow shoveling, meals, maintenance and repairs, possibly housekeeping, etc., etc...Also having ready access to health care on site is a wonderful, wonderful secure feeling.

Edited by Linda Garren

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