For those who care for someone with Parkinson's disease
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By Mary On 2009.10.01 17:14
Hello Everyone! I have been out for a couple weeks due to my Dad's condition. He ended up in the hospital due to a urinary tract infection. Apparently he had it for some time and I never realized it. While in the hospital, he had something happen where he turned blue and extremely cold and nearly died. The doctor said that only his will to live got him through that night. [I thought it was because of me crying hysterically through the night telling him "I'm not ready."]Then a couple days later when we thought we could take him home he started bleeding from his penis. He lost so much blood, they had to give him some. Well, they did all they could for him medically but he continues to eat little to nothing so he continues to get weaker. As of yesterday, he is living at a veterans nursing home. I am missing him something terrible. I thought I'd have such relief when his cares were off my shoulders but I only have sadness. I miss him terribly but he progressed to the point where medically he needs 24/7 care and physically we were struggling, especially at bath time. I wish I could move in with him the first week but I guess that is not allowed. He must feel so alone. I struggled as a caregiver and now I am struggling not being a caregiver - go figure. Thanks to all so very much for all of your help and support. Hugs and blessings, Mary

By mylove On 2009.10.01 17:55

What an awful few weeks. I'm so sorry to hear that things have been rough for you. I know that you are probably visiting him all you can. The separation has got to be hard on both of you. I wish you peace and strength through these next few weeks as you both adjust to your new realities. We are always here if you need someone to talk to.

By dkleinert On 2009.10.01 23:09
Sounds like you have had a very rough time... glad your Dad is holding his own now - how scary for you. Keep in touch - hang in there.

By Mary On 2009.10.02 10:29
While Dad was in the hospital, he was diagnosed with "progressive supranuclear palsy," which is in addition to the parkinson's disease. It is frustrating that it took a hospital visit and a new neurologist's evaluation to get this diagnosis. Dad's speech therapist is on top of it though. They did a swallow test and have changed Dad's diet to pureed foods and thickened liquids and he is doing much better getting things down now. Thanks for your responses, hugs and blessings, Mary

By lurkingforacure On 2009.10.02 18:47
Mary, I am so sorry for you with this new diagnosis, as if the PD weren't bad enough. Praying for you, lfac

By Mary On 2009.10.30 16:23
Dad was sent back to the hospital. The tests results did not indicate what happened to him. He sort of blacked out for a bit and when he was responsive again he suffered extreme hallucinations and confusion for three days. The doctor feels it was something called a "TIA." Dad has this extreme delirium going on. He is better now, six days later, but not great. His dementia has increased after this past episode. I am not sure if it is permanent or not but this is my first experience with obvious dementia and I do not like it. He usually doesn't know where he is, who you are, and has hallucinations. Now I understand what others have posted about dementia. I can't imagine caring for him in my home like this. It would never, ever be safe to leave him alone. Dad also continues to lose weight. I wonder how long he can last with eating little to nothing. Thanks for listening, Mary

By annwood On 2009.10.30 18:58
Mary - Sorry this is happening. Yes, the dementia is a horror. Nothing like the forgetfullness and mild memory loss we sometimes speak of here.

A TIA is a stroke if they haven't already explained that to you. It certainly does nothing to help the PD and may only add to the dementia like symptoms.

It is surprising how long a person can last without eating. As long as there is some fluid intake they can survive for weeks.

Stay with us and keep us updated.

By Emma On 2009.10.31 03:14
Mary, I'm keeping you and your dad in my thoughts. I know how hard this must be for you. Hang in there as best you can.

By Mary On 2009.11.02 10:44
This weekend Dad started up with seizures every two hours. So now the doctor thinks he may not have had a TIA but a seizure that the nurse walked in on the tail end of it. Dad is on seizure medication now that seems to be helping. He never had a seizure before. They have yet to find the cause. He turns yellowish during the seizure so I am wondering if his liver is failing due to his extreme malnutrition.
Thanks, as always, for your thoughts. Mary

By Mary On 2009.11.18 17:19
I regret to inform you all that my Dad passed away on November 14. I was laying in bed holding him when he took his last breath. It took me nearly three hours after he died to leave his bed. I was holding him keeping him warm. My heart aches for him now. I look back on the days when I was caring for him and wondering how I'd do it one more day and now I'd give anything for one more day with him. I am just trying to make sense of it all now.

I will be in the shadows now and pop up when I think I can be of help to others but I will not be gone. This forum was my salvation and I hope to help others along this very, very difficult journey.

Thank you to all. Hugs and blessings, Mary

By annwood On 2009.11.18 18:00
Mary, I am so sad about your Dad. Know that you were a wonderful, caring daughter and he knew that. It will take time but you will be ok. It is now his time to watch over you and I personally believe that they do. Try to rest and time will heal the rest. I hope that you do stay with us. Those of us who have lost the battle have much to contribute to those still fighting.

By anidaholady On 2009.11.18 19:19
Mary, I'm sad for you also. Hopefully you will be able to take some comfort in knowing how much you did for your dad when he needed you. He is healed now, and no longer struggling. I certainly hope you do keep checking in with us. As Annwood says, those who have lost the battle have MUCH, MUCH to contribute to those still fighting. You are in my prayers.

By lostdaughter On 2009.11.18 20:05

My thoughts and prayers will be with you. As has already been said, your dad is no longer in pain and I'm sure he would want you to take care of yourself. You gave so much of yourself to your dad. I hope you will find peace and comfort in the days ahead. Please do stay with us. We care about you and appreciate your advice and input.

By Pick On 2009.11.18 21:09
Dear Mary,

My thoughts and prayers are with you. For what it's worth, I truly believe that your father is smiling down at us from a place where hands never tremble, footing is always sure and loved ones never feel alone. You are truly a hero for caring for him so compassionately and for so long. Blessings to you and your family.


By Emma On 2009.11.19 05:41
Mary, I am so sorry for the loss of your father. What a blessing for both of you that you were able to be there for him at the end. I hope that you will find peace and comfort knowing that his struggle is over and that you were a wonderful and caring daughter. I will keep you in my prayers.

By karolinakitty On 2009.11.19 06:56
Mary, So sorry for your loss...I know myself after being with my mother (even though she didn't know i was there) singing her songs and holding her was a great comfort later knowing i was there for her. It didn't seem it at first, it was hard.
Please stay with us as long as you can. I'm sure you have a wealth of info to help those of us still on our way.....

By susger8 On 2009.11.19 07:45
I'm sorry to hear that. I hope you find peace and comfort in knowing that you cared for him when he needed you.

By Mary On 2009.11.19 10:52
Thank you everyone for your best wishes at this difficult time.

I feel ashamed of all of the complaining and venting I did in the past. Have others felt that after losing their loved one?

By annwood On 2009.11.19 11:04
No need to feel shame or guilt. It was a nearly impossible job filled with frustration, fatigue and fear as you watched your father through this terrible disease. You did what so many people could not have done. Yes, there will always be those time you wished you might have done something differently or said something you wanted to say but we all do experience this. Pat yourself on the back and know that you did a good job.

By kd On 2009.11.19 11:19

I'm sorry to hear about your loss. When you wrote:
"I look back on the days when I was caring for him and wondering how I'd do it one more day and now I'd give anything for one more day with him."
it really hit home with me because I experienced the same feelings. After my mother's death, I felt guilty and ashamed about the way I dealt with caring for my mom. There are still days (a year later) when I wish I could go back and change things - to have been more empathetic and patient. It's hard and I'm now (slowly) coming to terms that I did the best that I could at the time. There were days when I was so tired from having no sleep, stressed out over whether I was caring for her in the best way possible, feeling bitter that my siblings were barely helping out at all. It helps to know that I'm not the only one feeling this way. Thank you for sharing. Take care.

By Mary On 2009.11.19 12:48
It truly does give me comfort to know that I am not alone in my feelings - both the feelings during my care of Dad and now my loss of Dad. I continue to very much appreciate the responses to my posts.

Hugs and blessings, Mary

By Mary On 2009.11.20 10:32
I read this and felt that it could also be called "One Flaw in Caregivers."

One Flaw In Women
Women have strengths that amaze men...
They bear hardships and they carry burdens,
but they hold happiness, love and joy.
They smile when they want to scream.
They sing when they want to cry.
They cry when they are happy
and laugh when they are nervous.
They fight for what they believe in.
They stand up to injustice.
They don't take "no" for an answer
when they believe there is a better solution.
They go without so their family can have.
They go to the doctor with a frightened friend.
They love unconditionally.
They cry when their children excel
and cheer when their friends get awards.
They are happy when they hear about
a birth or a wedding.
Their hearts break when a friend dies.
They grieve at the loss of a family member,
yet they are strong when they
think there is no strength left.
They know that a hug and a kiss
can heal a broken heart.
Women come in all shapes, sizes and colors.
They'll drive, fly, walk, run or e-mail you
to show how much they care about you.
The heart of a woman is what
makes the world keep turning.
They bring joy, hope and love.
They have compassion and ideas.
They give moral support to their
family and friends.
Women have vital things to say
and everything to give.

By WitsEnd On 2009.11.20 15:11

God bless you and your family through this difficult time. You are in my thoughts and prayers.

By LOHENGR1N On 2009.11.20 15:43
My condolences Mary to You and Your Family. My G-d send Angels to watch over and comfort You & Yours in the times ahead. To guide You through the darkness of grief, draw you into their comforting embrace, strenghten you in times of doubt and sorrow. Lighting the way to healing. Laugh when you can, cry when you must and take time to heal. Know that You and Yours are in our thoughts and prayers. We're here for You just as much now as before Mary. Be kind to yourself, remember healing takes time. Sincerely Al and your friends (family) here on the forum. Take care and G-d bless!

By dkleinert On 2009.11.20 23:06
Mary, My sincere condolences for your loss of your precious Dad. Being with him at the end was a real gift. I pray for your peace and solace during the grief you are experiencing. May G-d send his Angels to comfort you and provide you with peace that only He can give as time moves on and you heal from your huge loss. Hugs and love to you, dear Mary.

By gilly On 2009.11.21 00:32
Mary, I am so sorry about the passing of your dad. I try to read most of the posts. I don't post much myself because my dh's problems seem so small compared to what most of you are facing.

I do know how well you cared for you dad and how faithful you were in protecting him. I hope you will find comfort and strength to help you through this terrible time.
Prayers and blessing

By Mary On 2009.11.23 14:30
Thank you for your continued posts.

I am so very thankful for my forum friends. You are all counted as blessings in my life.

Hugs and blessings to all, Mary

By Mary On 2009.12.01 12:40
I was interested to know what would be listed on my Dad's death certificate as the cause of death. They listed the cause of death as Progressive Supranuclear Palsy (3 years) and other conditions: Parkinsons, ASVD, and Prostatism. I was glad to see that Parkinson's made the list. Just FYI, Mary

By LOHENGR1N On 2009.12.01 15:58
Mary, thank You for sharing this with Us. Each and every time Parkinson's Disease is listed it helps Us. Helping procuring funding, helping in recognition that P.D. is NOT just a nuisance disease but a terminal disease. One needing the attention and research for a cure just as much as other terminal illnesses though they may be more known. Spreading awareness and education about this disease and it's effects. Each and every time helps Us. It honors those for whom the fight is over, Gives We who are fighting on more hope that Our fight has purpose. Hope that We battle not in vain but labor to make life easier for future patients and it gives those who will follow Us on this unwanted walk a stronger foundation to refer to when They take up the battle in our place. Again Mary Thank You for sharing with Us. Sincerely Al

By Mary On 2009.12.03 17:13
Al, this is a truly horrible disease. Watching this disease slowly take my Dad's life from him was the hardest thing I have ever done. A cure must be found. We took the monies given to us in Dad's honor at the funeral and donated it to Parkinson's Disease research. Al, you are a blessing and joy to this forum. Thank you for all you share! Mary

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