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Topic When family acts like they don't care..... Go to previous topic Go to next topic Go to higher level

By dkleinert On 2010.12.11 12:59
I have spent a little while reading a lot of your recent posts - my dear friends. Have been gone from the forum for several months. Had computer problems for awhile, then all of life seemed to overwhelm me. Have been trying to go to bed earlier because I am so tired all the time now, and late at night was when I would spend time with you on the forum. How I miss all of you.

How do you handle the sad, angry, resentful feelings that come up (I may be alone here - you may not have those issues) when my son and his family, who live 20 minutes away and are our only family here in NC, rarely call or come around, offer to help with anything or visit or anything? They criticize the fact that we could not sell our house and had to stay here, and consequently I have to work 2 jobs just to keep the bills paid and food on the table as well as take care of my dear PD husband, who recently lost his balance on the front porch and fell off (4 steps high) and broke his right arm and shoulder. My job requires I work afternoons and evenings and weekends, but it is a job, and I am thankful for it. Sometimes the load and loneliness becomes overwheming to me, and the despair runs really deep.

I need your wisdom.....thank you for being there always.

By Michele On 2010.12.11 15:26
Hello dk, No advice here, just that I can relate. My PDer husband is the one who is sad and angry because his family ignores him. We have no children so our situation is different. However, he has 3 siblings who do not contact him - not even a Christmas card. Two of them live in different parts of the country but there is no contact, support or even an occasional card. I feel so sad for him and angry at them for their thoughtlessness. Fortunately, my family is helpful and attentive, but it's not the same thing.
I can't imagine what it must be like for you to have your child not only neglect to help you in any way but to criticize you. My only thought is that he is afraid that he will have to take care of his father either physically or financially and he is distancing himself so that this doesn't happen.
You say that he doesn't offer to help but do you ask for help? Being a caregiver we are so used to doing everything we sometimes don't think to ask for help. Also, as women I know we think that they/he "should" see that we need help. Can you talk to you son and tell him you could really use his help and be specific about what he can do?
You are not alone in these feelings. Hugs to you

By Emma On 2010.12.11 16:18
Donna, I am so happy to hear that you are still reading the forum! I have missed you and wondered where you were.

I can totally relate to your feelings. My husband has one son who lives about an hour and a half away. That son has one son and three step-daughters. The only time we see them is sometime around Christmas. This year they couldn't even manage that, they don't have any open dates. Forget about helping us, he doesn't even return his father's phone calls. I have talked to him and he insists that he is concerned and will do whatever he can to help but when I call with a specific request he's too busy. I've written him (and his sister) a letter explaining how bad their father's condition is and begging them not to abandon him. No response. My step-daughter lives in anothjer state. She used to be good about calling her dad but now she's as bad as her brother. Ironically, for the past two years she has worked in administration at a retirement/assisted living facility that has a Parkinson's unit. Now she thinks she's a Parkinson's expert and on the rare occasions that we do talk to her she bosses me around telling me what I'm doing wrong. The whole thing baffles me. My husband was always a great father and I was a good step-mom. We had a great relationship and lots of contact before my husband got PD. It has been suggested to me that maybe they are just upset and can't deal with the fact that their dad has this disease. Trust me, that's not it. They are just too selfish and consumed with their own lives to bother.

My daughter, who is a single mom and works full time lives about 5 minutes away. She's not perfect but she calls or e-mails every day. She offers to help. She brings my granddaughter over to see "Grandpa". Even her boyfriend helps out. Last Christmas she talked to my husband's kids about going in together to buy and install some additional grab bars and a gate in front of our open stairway (which had to be custom built) and a couple of other small things to make the house easier and safer for my husband for our Christmas present. They agreed. She and her boyfriend, who is a carpenter, got the materials and he did the work. She sent each of my husbands kids an e-mail telling them what their share was ... for materials only ... she didn't include any labor costs for her boyfriend because he's a great guy and wanted to contribute that. Neither of them have ever responded to her. It is just outrageous and it makes me spitting mad. And it breaks my heart to see my husband heartbroken.

So yes, I know exactly how you feel. I don't really have any advice but I sympathize and I think your feelings are justified. Stay with us my friend, please!

By lurkingforacure On 2010.12.11 20:18
So glad you are back, it's great to hear from you. Although I am sorry your husband's family is not as helpful as they could be.

It is completely selfish and to stay away means they are trying to avoid the guilt they feel from deliberately ignoring the situation. How I wonder what people like this would expect from their own kids/family if they were to have PD? I bet they would expect way more than the little bit of help we caregivers would ever ask for.

Not calling, not coming to visit, ignoring phone calls, all of this translates into "you are not worthy of my time" and it's sad for everyone. I believe that people like this will have major regrets, especially if they find themselves ill or feeble in their later years.

Yesterday I was helping my mom with paperwork, which is becoming increasingly hard for her to deal with, and she asked to treat me to lunch. I nearly fell out of the chair. She has never paid for a meal for me when we go out, ever. In fact, I always pay for her. I didn't have time to go to lunch, but I made time anyway. We went and she had a wonderful time hearing about her grandkids and when I took her home I thought, that was probably one of the best things I have ever done in my life. It taught me a lesson, one I thought I already knew, about how important these moments are. She knew I didn't have time for lunch, but my making time to go said "you are important, you matter, you are worth my time and attention."

I don't know how you get people like the ones mentioned in this thread to get that lesson. Perhaps remind them of this saying:

Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant with the weak and the wrong. Sometime in your life you will have been all of these.

So true.

By karolinakitty On 2010.12.11 23:31
Welcome Back .... I did miss you and i know how things were for you so i didn't email...
So sorry you are still going through so much and that your son has left you standing....alone.....
I know we've talked many times here about losing friends and family as a result of this disease. My guy's kids lost in their mother's world and didn't have much to do with him before and not so long ago his daughter wrote him a nasty letter. He refused to write her back, but I did.... I basically told her to buck up or forget about her dad. I told her up front, if you don't want to make a point to reconcile now, don't think about doing it next year because he may not know who you even are.... She elected to do nothing...
There is nothing we can do about our children when they become adults. The choices they make may not be right. Being selfish and not willing to lend a hand will come back on them. They will miss the times they could have had. Coulda...shoulda...woulda..... It's all too late when you have to look back.... maybe a talk like that to him will work... maybe he doesn't want to face the reality of it all.... but maybe you have to force that issue....
Glad to see you back with us and please take care of yourself ...... you will be no good to anybody if you don't .......

By parkinit On 2010.12.12 10:55
All I can say is that we hear you. Many of us have "similar situations." My husband rarely gets calls from his kids (I speak to my daughter who lives out of state either on the phone or via e-mails at least every other day) - he always has to call them. I know he feels and sees the contrast as I do and it saddens me.

Yes, of course, we see them around Christmas. I've had to delete a lot here. I sympathize.

hugs to you...

By susger8 On 2010.12.13 09:03
I suspect they distance themselves because they don't like feeling guilty that they are not helping.

I'm fortunate that my sister is very supportive, although she lives on the other side of the country and so she can't do much directly. But when she was visiting me last summer, she helped me take Dad to the doctor and went with me to check out nursing homes in case we end up needing one.

The person I get mad at is my husband's brother. My father-in-law is a widower and he's having a lot of trouble coping with bills, housekeeping, and general organization (things his wife used to do). My husband and I help him a lot, but my brother-in-law, who lives with his father (free!) does next to nothing. He just criticizes and argues with his father. But then, he's usually drunk. That's a whole different story.

I am forseeing having to take care of my father-in-law as well as my father. I know some of you take care of more than one person, I don't know how you do it!


By sube56 On 2010.12.13 16:08
Hello to all,I have just read my story again,My twin sister came in from fl., Of course we paid for the flight,She stayed 3 months and ran off,Leaving me alone a
gain to deal with it all.She said that if we would pay,she would stay!She just could'nt handle it. well someone has to,I don't go to church anymore,rarely get dressed,and am so stressed. mom is getting worse,falling outa bed,hard time walking,her bed to keep clean,Everyone says get help,lol,how do you do that? I cannot pay25 an hour for help. I know that I am rambling,Sorry just needed to vent

By KD On 2010.12.13 17:58
Gosh, I can relate to all of you who are taking on primary care with very little help. I went through the same thing with my mom. I left my job and moved back home. (Three years later, I'm still unemployed.) My younger sister was busy with her four kids and my older sister just couldn't handle dealing with it. I hesitated to ask my brother to come home to help because he was the primary caregiver to my dad a year earlier. (I had come home too but he took charge of everything with my dad and was reluctant to let anyone else help.) My brother came back towards the end with my mom and in some ways it made things even worse. We had major fights and he said some pretty mean things to me in front of my mom. I still feel guilty about it to this day knowing that it must have caused her pain to see us fighting like that. I think it was the exhaustion, fear and stress that brought out the worst in us.
Our family was always close knit and I always felt we would be there for each other "through thick and thin." It was a real eye-opener. It took awhile but I've managed to put my anger and bitterness behind and it's almost like "old times." I realized that it would have totally disappointed my parents if the family fell apart because of their illnesses.
I just want all of you to know that even though I don't post often (I usually lurk), I keep you in my thoughts and admire what you're doing for your loved ones.

By dkleinert On 2010.12.16 23:38
Thank you , my precious friends. Thank you for being there for me. Thank you for sharing your pain and sorrow with me. Just knowing I am not alone helps so much. Michele - I used to ask my Son to come over to help with various things, and he would VERY reluctantly commit to come over. Usually it was a manual labor issue - something I could not handle alone. Then he would come over and immediately say when getting out of the car "I can only stay X minutes, then I have to get back home, because......" Or he would agree to come to help with something that needed both of us to do and he would bring the toddler with him - now that just does not work. When we needed to be on a ladder or using equipment to make a repair, whatever it was - we could not watch the toddler and so he would expect me to take care of the baby while he and I did whatever I had asked him to do, and then the statement getting out of the car was "I can only stay for X minutes 'cause Gabe needs his nap at X time". On every occasion, the thing he had come over to do only was partially finished when he left, and I had to end up paying someone to help me finish it. The tone of voice when I asked for help, and the boundary he would always set up when he arrived to help just hurt. It was not even that I asked him to help even once a month - once every 6 months if that, and most times he would not even go inside to see his Dad. It was just painful, so I stopped asking. His statement as he would leave each time was "you and Dad need to sell this place and live in an apartment". And so I spent almost a year readying the house to sell it and then could not sell it. The economy in our areas is bad, but we tried. So since I could not sell the house, I have never again asked him to help, and he nas never offered, never asks if there is anything he can do - nothing. So it is not that he does not know - he does not want to do it. Emma - I am so thankful your daughter and her husband are there to help you - that is a priceless blessing. At least there is someone you can count on. Lurking - your observations are right on the money - I feel that we are unimportant, not worth his time or attention and that we just do not matter. Thanks for the "Resolve" saying. It is so true. Karolinakitty - wish having a talk with my son would have helped, but the day I wrote the above post I got up my nerve and did that very thing. In the end, what he said was - "I have to live my life my way and make my choices, and you can live yours your way." I told him I hoped that none of his children would ever treat him this way, and that he would never know how painful being on the receiving end was. I guess it is just life even though it is not how we would ever have chosen it to be. I was raised, and I thought I had raised my children, to respect our parents and grandparents. Never in a million years would I have ever done this type of thing to my Mother or grandparents - never. So I just don't understand it. What I do understand is that you are in the trenches also, and that we have a special bond that no one else can understand.
Thank you for your love and support - it sustains me. I was telling a friend I ran into at the grocery store about you. She asked if I had anyone to talk to for support, and I told her how literally lifesaving you have all been for me. Just being able to say what is painful - give it a name - give it a voice - knowing that here is a safe place to do it - means so much and then to have so much love given in return is a priceless gift. MANY Loving Hugs back to all of you, dear friends. Donna in NC

By sube56 On 2010.12.26 16:49
I really do understand, My Twin sister moved here from florida,Paid for the ticket to fly her here,Praised the lord for answering my prayers,She stayed almost 3 months before she left,I had to keep her happy,while taking care of mom.I still thank the lord for bringing her here,mom got to see her while she still knows her. I took her leaving hard,pulled up my boot straps,and went on with our lives.I always knew that she could'nt handle this,I get so tired,I cry in the shower,no one can hear me. People run,they are afraid of the word Parkinsons and what it entails. I cannot RUN. I guess thats why God made angel's for us to be there when everyone else turns away.

By LibbyBuck On 2011.01.12 21:24
It makes me very sad to feel like the family doesn't care, but what I realized, is that they do care but A.) they don't know what to do. B.) It's Too Hard to look at. C.) They have kids, homes, etc... D.) It's too much to deal with.

Watching someone you admire decline is tremendously difficult. Give your family a break. Maybe it's time for a family conference?

I did that this week and although it didn't solve all of our problems, it gave us all a better understanding of where we are at today, with this.... good luck, god speed.

By Emma On 2011.01.13 05:55
We have had family conferences. We have have had phone conversations. I have written letters. News flash ... there ARE selfish people in this world who really don't care. Sad fact of life.

By lurkingforacure On 2011.01.13 08:47
Ditto Emma. What I've found is that some in the family will seem to step up a bit, but then it's too inconvenient, too time consuming, maybe even too depressing, who knows, but things go back to what they were.

My husband, on the other hand, has always been the "go to guy" when crap happened (probably why he got PD in the first place, way too much stress). No one seems able to let him out of that role. All of the expectations that go with being "that guy who will fix everything" persist. No one is willing to let him slide, because that means they may have to do more themselves. It's easy to step in for a brief show, then whisk away and go back to the busy PD-free life, and perhaps that little bit of infusion into a PWP's life makes some people feel better and appeases their consciences. Who knows, really. I just know that there really are selfish people in this world who really don't care.

By alicemay On 2011.01.14 07:37
Hello, I have not posted before but have read your pages for some time and found a lot of help. My PD husband died last week after 19 years with Parkinson's. The comments about family not caring strike a chord with me. After virtually ignoring us for years because 'they found it hard to see Dad like that', and any other excuse they could find, they made the last three weeks of his life even more difficult with their constant presence and declarations of love for him. The funeral was 'hijacked' by these people who discovered so very late how much they loved him. What a shame they left it so late that he did not know them. I am going to rest for a long time now. My thanks and best wishes to you all. You have been a source of great strength to me.

By rmshea On 2011.01.14 08:36
My prayers for you will be that you indeed get that rest and that God will be near you in the new life ahead.

By Emma On 2011.01.14 09:00
Alicemay, I am so sorry for your loss and for the added sadness and stress from your family. I'm glad that reading this forum was a help to you and I hope that you get that well deserved rest now. Peace and blessings to you.

By parkinit On 2011.01.16 11:29
AliceM - So sorry to hear of your loss and family strife.

When those people decide "it is too difficult for ME to see XXXXX like this; yes, this is selfish. They are not thinking of relieving the caregiver (spouse, etc.) or how much their relative would enjoy the visit.

My dad, as I have said, has cancer and has weeks to live (well, he's already lived past doctor's expectations), but he always "rests up" and has my mom wake him for my visits. For those children who are listening here - no matter what your age, if you have a sick parent, GO VISIT YOUR PARENTS WHEN THEY ARE ILL - REGARDLESS OF YOUR OWN SITUATIONS. They love you and want to see you.

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