For those who care for someone with Parkinson's disease
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By ladybug On 2010.12.28 10:42
Dear forum,

I have been watching this forum for about a week and am very impressed by the wisdom, strength, love, insight, sense of humor in spite of hardship, endurance and compassion you all have shown.
I decided to join since I am also faced with becoming a full time caregiver. I would love to receive some advice from you whether I should go along with it or back out while I can.
I am a healer and yoga teacher and therapist, and help people get out of emotional and physical pain.
Four years ago while I was still in training (even though I never stop learning new things) I met a man 28 years my senior. We had great chemistry and I especially liked his sense of humor and intelligence. He told me he had PD, but at the time I didn't worry much about it since it hardly showed. He has a big house in NY and I moved in with him after a while. I am also a painter and I use a room in the house as my studio. We also have separate rooms since i am a free spirit and he has been getting more sick and doesn't sleep much at night. Recently he asked me to marry him and be there for him when he gets worse because he has no kids and his only family (sister with her grown kids) live far away and are quite selfish. He worries that they would just sell his real estate and put him in a nursing home. He also has no long term insurance and is tight on cash although he has another house besides his home that may fetch a million...but doing the math with long term care costing 150,000 in ny and the possibility of him needing it for more than 10 years makes it scary. what if i can't work because of him and get sick? he went to a couple of lawyers to set up the real estate so that i can sell it if he gets incapacitated. He is definitely declining! These lawyers a complete idiots and jerks as they seemed to have told him that I am a golddigger and that there is no reason to give me access to his real estate. They agree that he should marry me insist on a prenup instead of estate planning. I'd be very grateful for your advice.

Thank you in advance and many Reiki Blessings to all of you!
Ladybug (Reiki Master)

By Emma On 2010.12.28 11:20
Hi Ladybug and welcome to the forum! I love your screen name, I call my little granddaughter ladybug :) My husband who has PD just started seeing a Reiki practioner. She spoke at our Parkinson's support group and we were both very drawn to her gentle manner.

As for your decision, it sounds like you have a lot of thinking and soul searching to do. I can't advise you on the legal matters. I guess I would ask you if you love this man enough to marry him or are you just thinking that he needs you to be there? It is a huge decision. My husband, given a choice, would not choose to have Parkinson's. I, given a choice, would not choose to be a caregiver. But here we are. I know that there are people on this board who think I have a negative attitude, I think I have a realistic attitude. I very much admire people who can stay upbeat and positive through this experience, however I struggle with it. It is a demanding and difficult journey for both patient and caregiver. I love my husband but there are days that I would like to run away, there are days when I am so mentally and physically exhausted that I don't know how I can go on. In the big picture my love for him overrides that but I would never say that it is easy or a blessing. Personally, I would not knowingly step into this, but that is me. There are others on this board who will give you a different perspective, including my dear friend karolinakitty who has an amazing postive energy that I wish I could harness. Only you can make the decision; you know your own heart, your abilities, your values, your strength and limitations. I quote my grandpa a lot on this board (he was a wise and wonderful man). He used to tell me that if I had an important decision to make to flip a coin because as it was coming down I would know what I was hoping for. It's true, you already have your answer, you just need to find it.

By ladybug On 2010.12.28 12:34
Hi Emma,
thank you very much for your response. My friend's cousins have noticed that he is doing much better since I gave him Reiki treatments and done yoga therapy with him. It really works.
I consider this man as my best friend, I am not sure how to recognize love for one person. I am altruistic and love humans alike. I also believe that things happen for a reason and things that seem difficult and painful are left handed blessings meant to make us stronger and grow.
Flipping a coin does work but at this moment I am going back and forth on what I feel is right...
At the moment, my life is quite comfortable. I can pursue my painting career and life as a Yogini but what if he suddenly needs me 24/7?
I don't know I can guess whether I will be able to endure what many of you have endured so far. I had some health problems like lyme disease, severe allergies, gall bladder problem that have disappeared but it is a known fact that things can flare up under stress. My friend assures me to take care of me even after death by leaving his home to me...but is money or real estate something to base decisions on even though it may make things easier? I would maybe spent many of my most productive and creative years attending to one person's illness. There is nothing more valuable than time and freedom to do what you like. Money or real estate doesn't seem to compensate for that in my, ladybug

By karolinakitty On 2010.12.28 14:29
Ladybug .. first i hope mylove reads your post. Her and shakydog have been trying to get into yoga. She'd love to hear from you i'm sure.
As Emma said, I am very positive and proactive, and i love my guy, as Emma, with my whole heart and soul. As she asks, so do I? Are you in love with him? That is the bottom line.
This disease gets so hard on caregiver and patient alike, that love and faith can only carry you.
So many on this board have talked about the opposite personalities their loved ones get, both from the drugs and the PD, that you have to realize the hard facts. My guy and I aren't legally married, but i was in this before PD and plan to be here for the long haul. Even though my guy has episodes in his sleep, kicks me out of bed(literally), arms flail toss and turn, the whole nine yards, i refuse to sleep in another room.
The plain simple facts are that you probably in time will be changing his diapers, cleaning feces and urine off the floors, helping him go to the bathroom, dealing with mood changes, helping him eat and all that fun stuff. I don't say that to be mean or discourage you. I say that so you know what you are headed for.
Now all that might sound more negative than positive, but you need to know the facts before jumping into anything you are unsure of.
If you know you absolutely love him, then there is no question.
As to his lawyers or the legal aspect of things. I have legal Power of Attorney over everything. I will someday inherit this lovely home on the lake and everything with it. We did this even though we knew something was medically wrong. We knew his mind was slipping. We are not that old, early 50's but have everything worked out. The lawyers were probably there before you and they are only protecting their client.
I do have a question.. why does he not have insurance? If he is on Social security he should have medicare. If he has been living off of trusts, there usually is compensation for medical care. Unless, he used all the money up.
No money nor real estate in any amount could ever compensate any of us for the job we do as caregiver. In my eyes it is the love we share with our PWP that keeps us going. PLUS, we might not always agree here on this forum, but we still show each other respect and dignity as it is oh so important to have someone, somewhere to encourage us, let us vent, challenge us and love us no matter what.
You will be needed 24/7, there is no doubt in time that will happen. How long or when, none of us know.
Many of us have lost friends and family due to our commitment to our loved one as well as from fear of the disease itself. Some folks out there just can't handle being around someone who is ill, or has a disease where they need round the clock attention.
Loving someone, giving all you have to give, and then some, fighting the good fight together is an awesome thing. Living your life for/with someone else, has so many rewards when you are doing it from the heart.

By Emma On 2010.12.28 15:08
Ladybug, It's me again. Karolinakitty is right, there is no amount of money or property that could come close to compensating you for what you will do as a caregiver. It is a 24/7 total commitment. Your own life will disappear in many ways as the disease progresses. We are at the stage kk talked about; I clean urine and feces, I cut his food, I shower,shave and dress him. I clip his nails, clean food and beverages off the floor. I scoop poop out of the toilet, break it up and try to flush it without overflowing the toilet. I sleep 3 or 4 hours a night because I have to help him if he needs to go to the bathroom or he's frightened by nightmares or hallucinations. It never ends and there is never time for me. That's not negative, it's realistic. In spite of all of that what I do the most is love him and there are days when even that is hard. But it's the only thing that keeps me going, love and commitment to the man I have spent the last 28 years of my life with. I will be here with him and for him until the end but it is the hardest thing I have ever done. There is nothing else on the face of the earth except love that would compell me to do this job. Please think long, hard and honestly about your motivation in caring for this man who is your best friend. Is that enough? Is the property enough? Are you ready for this level of commitment?

By parkinit On 2010.12.28 16:08
Ladybug -

I'm not where Emma is. I fear that stage in my PDers life (and mine).

I, too, love my freedom and even though I love my beloved spouse with all my heart, do I, willingly, want to sign away "me" to care for him as the disease progresses? Not really. Will I? Of course. I fear the depression that may come. I fear the loss of "me" as I become a full-fledged caregiver 24/7. I fear the loss of the man I married as he becomes another man - totally different from the one I married.

Now, I take breaks away from the house and take my dog for long walks. He is jealous of the dog and says "You love your dog more than me." Parkinson's is a very selfish disease. If he were able to get out and about himself more, he would never say things like this. He is jealous that I'm able to still get out and do things. I still enjoy life and a breath of fresh air and the sunshine. I bask in it. I believe he resents the fact that I get rejuvenated when i get away from him. I'm not rejuveniated by being with him. It exhausts me. I fear reaching the exhaustive state Emma must be in all the time.

Back to you. You cannot count on "getting" something after death. That can always be changed (while he is still alive), so if you are NOT financially sufficent on your own, don't enter into a marriage with someone and run, run, run away fast. The talks of a prenupt even make matters worse as you will have dedicated your life to someone else, foregoing the income you will need to make to support yourself (yes, you will end up having to give up your career to take care of him) in later years. Do this friend and yourself both a favor. Move out, continue to be his friend, but you don't have to commit to caring for him for the rest of your life. You WILL become a shadow of your former self as you become a caregiver: You stay home more, you dedicate and invest your life to one person, you become more reclusive as you are unable to get out only for brief times to get groceries or rund errands, and then later, only if you have someone to relieve you of your caregiving as you do these errands. Also, you lose many of your friends (and become distanced from family) because of your reclusiveness.

It doesn't sound like he is willing to invest in this relationship - that means by providing you with some security (if he is able, and it sounds like he is) after you have taken care of him for the rest of his life. He sounds very selfish in that he wants you to take care of him, but he is not willing to take care of you. To me, it sounds like you would be used and possibly could end up very, very bitter in the end. Be careful in your decision.

Call me negative or whatever, but I feel like Emma, I'm just being painfully honest and realistic. No rose colored glasses here.

By lurkingforacure On 2010.12.28 17:08
Hi Ladybug,

You are very wise to ask this of those here. We are all at different places and have much experience to offer you. Probably more than you want!

I think the advice you have been given so far is very good. I would also add this.

Do you ever plan to have children? If you have children with this man, it will be very hard. My husband has PD and cannot be the father he would like. I do it all. Every practice, recital, concert, rehearsal, sleepover, playdate, grocery shopping, breakfast lunch dinner and laundry and pay the bills and meet the teachers etc. etc. etc. It is beyond exhausting. Even if your guy did not have PD, the sheer age difference between you will require that you do more as a parent than him.

If you plan to have children with someone other than this man, are you willing to wait until your caregiving duties are finished with him to begin a family with another man? Time may not be on your side here. Also, I doubt many women could caregive to both a newborn/toddler and a man with advancing PD at the same time. Trust me, I'm one of them, it's damn hard.

Do you have friends? Plan on losing many, some will be those you thought were your best. It is very sad.

Watch for whatever family is around to drift away, now that you are in the house to "take care of ___". Don't expect much support from your own family, either, as they may well view the situation as one you voluntarily undertook.

People with PD can live a long time, which is great for us here, but something you need to factor into your decision. Are you prepared to care for this man for ten or twenty years, maybe even more if a new treatment comes out that can prolong life with PD? What will be your life after your caregiving is done? You may be 50, 60, maybe 70 years old, I don't know... and depending on your age at that time, your options may be few.

What if a cure for PD comes out while you are caring for this man? Do you plan to spend the rest of your life with him if he is cured? He will still be 28 years older than you.

As far as "getting something" after he is gone, forget about it. Check into how expensive PD is, do the math, and realize that unless he has millions, and I mean millions, there will be nothing left to leave to you no matter how great a caregiver you are. I was told PD will cost my family over a million dollars, rough estimate, by our life insurance company. Medical costs never go down, either.

And family members can always challenge what a relative did, I don't care what an agreement says, especially where the person had PD. I'm a lawyer, and unfortunately have dealt with these issues. Unless a document was signed long before any cognitive competency issues were even remotely present (as in, the guy was running a company at the time he signed the document in question), a challenge to what he signed can always be made. Legal battles are protracted, expensive, and emotionally exhausting. Your guy will either not be around to defend you, or if he is, may not have the competency to testify. A lose-lose for you all the way around, even if you win a little bit of money or some house somewhere.

I hate to be the pooper here. This is a huge decision. You cannot agree to care for this man now and then later realize you have made a mistake when things get even harder and bail on him. Take the time to think it through very carefully, and do what you feel is best.

I think there have been other people who have come to this forum and asked the same thing. You might want to search this forum and see what we all said to him/her.

By ladybug On 2010.12.28 18:45
Thank you so much for all your advice! I am humbled by your accomplishments in taking care of someone with PD with all that it takes and at the same time still making the effort of offering such profound advice.
I am not kidding when I say that you are as close as it gets to living saints with your selfless caring attitudes and never ending giving of yourselves. Being a healer, I can say that people in the healing profession needs to take a look at you guys to really understand what compassion means!
All of your advice hit home. I'm 40, so this is definitely a crossroad for me. I read my previous posting again and caught my own denial...I said that i am comfortable at the moment with time to dedicate to yoga and painting. The truth is that even though i have time to paint and for spiritual practice, I feel depressed and unmotivated. The whole idea of this man deteriorating in front of my eyes towards complete dependency and dementia...I can tell that where it is heading, is sucking the life out of me. I haven't realized all this untill recently when I saw him getting frozen more often and unable to multitask. I have been in his life for almost four years and leaving him now seems very cruel but maybe the right thing to do, and it would be more cruel to him to leave later. I also have to start a whole new life if I leave. None of this is easy. You asked me to inquire within if I love this man. He is the closest and dearest person in my life but I don't know if it is love and imagining a life that you described is scary. Leaving him now is heartbreaking as well. I have to do some soul searching for sure on this one. Thank you again for all your support and feel free to ask any questions about yoga and, Ladybug

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