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shirleyengebretsen

Single with PD

51 posts in this topic

I see seminars for care givers and spouses, but nothing for people single and have PD.

 

It is sometimes scary to think of the future without someone dedicated to walk through the journey with you.  I am lucky because I have family and good friends, but I cannot plan to move in with them if things go poorly.  I do have a strong faith and know God will be with me whatever happens.

 

 

I just wondered if anyone else is facing this alone.

 

Shirley

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As a committed life long bachelor the deeper fear and sadness for me developed from the certainty that continuing the relationship I had been enjoying necessarily would subject my beautiful friend to less than the full life she deserved.  Ties were cut and the association concluded. When I read the complaints of resentful if not bitter caregivers posting at this forum I am reminded of the correctness of my/our decision;  it has not been uniformly easy but my independence with the assistance of a terrific home health care aid is maintained.  More later on this post...    

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Shirley, 

 

I became single after my diagnosis. It was a huge shock. I have no family willing to help at all. I began using agency caregivers in 2013 after a couple of stints in group homes.

 

Depending on where you live, there are state benefits you can qualify for that won't leave you totally alone. I have a couple of neighbors in my apartment building who are willing to help when my caregivers can't make it.

 

I too have faith that my needs will be met. Just know that there are other singles here who understand what you face. I find it helpful to stay in touch with my local PD support group.

 

Best wishes,

 

Dianne

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i am alone, and and wish i had someone to talk to about things.    i think it is the hardest part.........and friends who won't try to find what it is like........maybe it is too much trouble, but i wish they would find out all the would all the time to be me.    just wish they would try to understand all the stuff.............it would be such a gift !

 

this forum is a gods send......reading mostly.   thank you all for writing.......it is so helpful.    x lu

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You wish you could 'talk to someone about things'...some of us wish we could talk (clearly) at all rather than mumble so much.

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Rogerstar1, Beau's Mom and Lu states,

 

It was so encouraging to hear from other singles.  You are the first ones I have talked to.  It was good to read your suggestions and support.  

 

Roger,  I admire your strength to make such a difficult decision.  I cannot imagine the cost to you and your friend. It encourages me to stay strong.

 

Beau's Mom,  I too became divorced after diagnosis.  It was extremely painful.  I don't know if it was your choice or your partner's, but either way divorce devastating.  Thank you for the suggestions.  I will eventually need to research the in home services.  Though I hope that is awhile before it is necessary.

 

Lu states,  It can seem unfair that friends do not understand.  I am afraid our culture runs on busy-ness.  We can easily feel abandoned when we are forced into the slow lane.  The fact that they are still friends tells me they like you.  I don't think they would come  around if they did not care.  Feel free to send a chat my way as we both understand the life with PD.

 

.

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Shirley, I am another pwp who shares your fate.  In my case, I thought I had a loving caregiver in my husband of forty years.  But in one of those twists life sometimes takes, I became his caregiver instead when he was diagnosed with metastasized cancer that was certainly terminal.  Three grueling months later, I was a widow.

 

Now, three years later, I am still doing amazingly well for having had this delightful disease for 19 years.  So far I am managing the house and all my activities with only minor difficulties.  Yet I know PD will advance, so I am also checking out assisted living facilities nearby.  Another option could be using my guest quarters for a hired caregiver.  I'm not a person who gets unduly attached to a home, though, and will probably prefer to sell the property when the time comes and use that money to help pay my monthly rent in an assisted living apartment.

 

At this point, I just try to stay hopeful and to keep my options open.  It's easier some days than others, to be sure.

Best regards,

J

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Dear all,

when i was first diagnosed, I was married and certainly  did not see myself getting divorced even though it was a  difficult marriage/ Because of my nature and the diagnosis,. it becam,e even ,more obyious to me to go and do tehe projects and trips[ the earliier the better.; My hiusbamf was not of the same mind. I see now that he was in denial. I decided to  takea 3 week religious pilgrimage to India  and gave him four years notice  but as we drew closer to my leaving,things deteriorated. We divorced; i war quite awhile.   So i rented a tiny cabin and have been very happy.However,, in March of this year eveything changed. My Parkinspm worsened. My medications did not work so well and i had extremely painful dystonia in legs and back for any wheres from 1-4 hours every day. At one point was in hospital   and needed help at night. I had friends alternate and stay for a night. They were all fantastic,but I wore them out   So i managed a way to keep on by myself, but it was sio scary when the discharge planner at the hospital asked who lived with me, who was going to help care for and i just burst into tears. I had no idea. And my head would spin trying to think of possibilities when no extra money available. Fortunately, the setback was temporary.  Then i started looking at my possibilities for when it happened in the future.  i am so grateful that my husband had taken out a long-term care policy that included assisted living.. So looked around, found one that o really liked and now i feel reassured.

My hardest moments were when i was awake and alone at night and i was in a lot of pain. I just wanted to cry out to him and be soothed,  i have a great network 0f friends and spiritual community and now i know where i can go when i can't take care of myself. It certainly has been easier to look into before i really need it and also to find out things like i need to pay the first three ,months with my own money. I do believe that I made the right decision because even though i would have security with my ex-husband, emotionally  i would be happier alone  that has proved true. We are friends and i still love him but  unfortunately that doesn't solve everything'  My heart is with all of you who are out there living alone, love Viriyagita

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Viriyagita,

 

It sounds as if you have made the right decisions for yourself all along the way, showing both wisdom and courage.  I admire your strength!

I wish you the best possible future --

J

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And another story )

 

Half a year before being diagnosed I lost my job (after 17 years at a famous IT company) and divorced. My husband started a new life with another woman and I stayed with our house, 3 daughters and my diagnosis.

After 2 years the company my husband worked at was bought by a big US company, the offices in Israel were closed and my husband moved to OR. After staying some time alone he realized that he doesn't want to be with his girlfriend, he needs us and only us. Last week he has got a Green card and he wants to apply for Green cards for our girls and me.

 

I am completely lost.

I miss him. I'm afraid to stay alone. On the other hand I don't want him to regret his decision.

Everything is so complicated... If I move how would I feel in a new climate? Woulf I find a good MDS? What about medical insurance after my husband retires? And more, and more questions ..

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That is a tough one, Natasha. You hate to base important decisions like this on money, but the insurance question is a REALLY important one. I don't know what Israel offers you in this regard, but it gets really complicated in the US, and usually is not that good.

The climate issue should be okay, and MDS's aren't too difficult to find, although you might have a little drive.

Good luck with this one, and keep us posted. I'd be interested in how it al works out.

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Natasha,

Yes, please do let us know how you are doing through all of this decision-making, My son, when he was ten, gave me  some good advice. I had asked him if he had made the right decision about something at school. He replied, "I made the decision and then i made it the right decision." I love sharing our stories, our joys  and sorrows. I find a hero or heroine in each person. Good night; i must get off the computer. My son is about to call, love viryiagita

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My mom used to tell me that you can't get full on love.   She thought young people were too romantic and thinks love conquers all.   Nothing ruins a relationship faster than anger and resentment when the bills are not paid and everyone is hungry.   As a result of her influence I have always been very practical and base my decisions on what's best for my situation.   If I were in your shoes I would worry if he will break my heart again and the trust issues would be hard to deal with however having a man around again is comforting.  Do what is best for you and your daughters.   Good luck!

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After divorce we learned to be open and to discuss our problems

It is not about love and passion anymore

It is about being not lonely, being a family

 

A really serious problem is medicine

In Israel we all are covered by medical insurance

Pills are cheap, I pay for my monthly portion about 50$

Famous azilect costs 4$

We don't pay for visiting a doctor

 

Of course there are problems but as far as I understand it it is much cheaper then in US

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There is one more problem - University

Our elder daughter are 20 and 22, one started learning in Hebrew university , another is finishing the army.

A year in the university costs 3-5K $

 

Worth to wait

 

The small one is almost 14. She is the only one that wants to move immediately and I would be glad if she stays with my husband. Meanwhile and she still need someone that can talk with her, take her to the hike, play with her and it is not me

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There is an American book I would like to recommend to you Natasha.  It is written by a psychologist and is tittle, "Never Go Back."  It teaches principles of decision making that can help protect against repeated mistakes.  It does not make decisions for you.  It only gives things to look for when someone is claiming they have changed, be it a spouse, a boss or a friend.  You might enjoy the read.

 

Shirley

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Thanks Shirley. Is it Dr Henry Cloud's book? Will read it. Hope the name of the book doesn't mean the decision has been already made... :)

Actually I am not choosing between returning to my husband or staying alone, but between moving to US or just living part of the year in US and another part in Israel

 

I think the discussion moved too far from the original topic - my fault. Will open another post if there are some new ideas/questions :)

Edited by Natasha

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There is an American book I would like to recommend to you Natasha.  It is written by a psychologist and is tittle, "Never Go Back."  It teaches principles of decision making that can help protect against repeated mistakes.  It does not make decisions for you.  It only gives things to look for when someone is claiming they have changed, be it a spouse, a boss or a friend.  You might enjoy the read.

 

Shirley

I give you a big star for being a class act.  Instead of telling everyone to stick with your topic  you decided to help a fellow forum member with her problem.  We will of course go back to your original question soon enough.  Thank you for being you.  :-P

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As a committed life long bachelor the deeper fear and sadness for me developed from the certainty that continuing the relationship I had been enjoying necessarily would subject my beautiful friend to less than the full life she deserved. Ties were cut and the association concluded. When I read the complaints of resentful if not bitter caregivers posting at this forum I am reminded of the correctness of my/our decision; it has not been uniformly easy but my independence with the assistance of a terrific home health care aid is maintained. More later on this post...

I feel the same way on the matter. I'm not sure I would want to subject a spouse to the burden of taking care of me in my declining health.

 

I think being single forces me to push myself to get chores done. I would like to think the exercise is beneficial at keeping this disease at bay for a little longer.

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Trust me as someone taking care of someone who does not have a choice in the matter now.  You will wish you have someone with you when that time comes.   It is scary and lonely and to be forced to trust a stranger to clean you up and feed you,etc is too personal but what can you do then?

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My biggest fear when I was diagnosed is that my husband who is 19 years older will likely not be there for me when or if I become dependent on another.

 

When we marry or are involved with someone, love someone and care deeply for that someone's well being it's tough not being there for them or them not for you when it's needed the most.

 

My question to myself is, do we love and build relationships to be secure in the future? To have someone to take care of us when we age or get sick? Or having it when you need it is just pure fortune...

 

I have no children and a complete dysfunctional family as many of you may remember from my first couple of postings.

 

I have to depend on my close friends....tough thing to ask...

 

How do you ask some one to give you the gift of "peace of mind" a burden on them a relief for yourself ...

 

A real Catch 22

 

D

Edited by Discovery

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