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By Pearly4 On 2009.06.21 07:13
My mom died in her sleep last night. I woke at 4:30 am with her timer for her pills going off and went in to give them to her. I threw on the light as usual and told her "Your pills are ready. Here they are." Then I went to the bathroom and went back to lay on the couch. After a few moments I noticed that she hadn't moved which is not uncommon so I went in to help her. She was cold and stiff, laying face down in her pile of pillows in her usual sleep position. Nothing we could do would cause her to sleep on her back - she hated it. She would crawl into bed and flop her stomach. Every morning I wondered whether I would find she had smothered in the pillows, like an infant not able to roll out of the pillow but she had managed. I woke my husband and we rolled her over (I couldn't do it on my own). It was obvious she died some time ago - she was already stiff and there was discoloration to her face -- Medical Examiner felt she must have died immediately after going to bed last evening. She was fairly independent at night yet -- only called for help occasionally so had no reason to check throughout the night.

They've left now and I'm such a jumble of things - my first thoughts when I discovered her were of all the evil, mean, thoughtless things I had said and thought. And yes, there was a touch of relief that it was over - both for her and for us. Such a much easier way to die than what everyone has described. And I'm so glad we've not found it necessary yet to place her in a nursing home. And that we had managed to take her on a trip to Omaha to see family just last month. And so sorry we never had a chance to take her to Hawaii or Florida though we had tried last year and she refused to go. She had just mentioned last week she wanted to try to go and we were in the process of arranging things.

Lord help me, I did my best. It wasn't good enough and it wasn't always with the grace and humility that I should have had, but I did my best, however poor it was.

By anidaholady On 2009.06.21 07:56
I'm so sorry for your loss of your mom. What a time for the back and forth of emotions all mixed together. You can take comfort in the fact that you did your best, even though you say it wasn't good enough. Probably we always feel that it wasn't good enough when our loved one still suffers from an incurable illness; no matter how much love and care we shower on them, we can't "fix" them. You took care of your mom, educated yourself with every tool you could find to help her, and provided her comforts in her life that she wouldn't have had without you. Your mom is at peace now and she can smile. My prayers for you and your husband during this time.

By Maggie On 2009.06.21 10:13
I just opened your post after I replied to your words of support. I am so sorry for your loss. What I didn't say in my other post is the reason we were at my in-laws a month ago was that we lost my husband's mother. I never though she would not make it to her eighties, but she had been in a serious decline in the last year with bad osteoporosis and heart problems. We were there several months ago, and we could tell she might not rebound. My in-laws were very private/independent people, and the heavy caretaking chores for my husband's father contributed to his PD symtoms progressing from almost not being apparent to being obvious to anyone who knows him during the last four months. I know he has the same mixed feelings every day right now that you are having. I hope I can do as good for my parents and my father-in-law as you have done when the time comes. Just let the bad times fade, and remember all the good times. Take care. Bless you.

By LaMissGirl On 2009.06.21 10:40
My heart goes out to you. I can only imagine the mix of feelings you are going through.. and of course, you know, that has to be expected. And you are correct and must continually remind yourself that you did the best you could and that's the most anybody can do. Thank you for all that you contribute to this forum and I hope that you will consider continuing to be a part of this community as you have a lot of knowledge to share. I hope you can get some much-needed rest and be really good to yourself.

By annwood On 2009.06.21 10:42

I am so sorry for your loss. You have been on here with me for many years and I KNOW that you did your best - your husband too. I also experienced those conflicting feelings of grief and relief and I believe it is normal. You have been through hell and you made it. You can always be proud of how you cared for your mother. My thoughts are with you today and always.

By lostdaughter On 2009.06.21 12:02

My heart goes out to you. I'm sure you did do your best and we all know what a difficult task you willingly took on. I also believe the conflicting emotions are normal. I hope, in time, you will find comfort in the fact that your mother didn't suffer to the point where she was totally incapacitated.

We are here for you. You are in my thoughts and prayers.

By caregivermary On 2009.06.21 12:24
You gave your Mom the best that you could give. Rest and take care.

By Tara On 2009.06.21 12:50

My sympathies for the loss of your mother. I know I will also have conflicting feelings when the time comes for my dad. None of us asked to be put through this hell, but since when is life fair, anyway?

Please be good to yourself and focus only on the reasons why you miss her -- the good memories -- and know that she is now an angel sitting on your shoulder.

By bandido1 On 2009.06.21 17:02
Pearly4: It is always with mixed emotions that I read of the passing of a patient. In your case youur mom apparently left this world quietly. I hope for the same. In the meantime I want to extend my codolences to you and your family, Bob C

By lynn On 2009.06.21 18:49
I'm sorry for your loss. You did a wonderful job taking care of her. What a blessing to go in her sleep. May we all go this way-PD patients and caregivers. She was with you until the end, what a comfort to her and to you.

By sooboo On 2009.06.21 19:02
Pearly4, I am very sorry to hear that your mom passed. After my mom died, I too remembered every time I was short tempered and impatient. But, we are human and we are not perfect. When people told me that, I thought, "but they don't know the things I've said". But, we do know because many of us have thought and or said the same things. For years you have worked and worried on her behalf. There really isn't more a parent can ask from a child. She knew that you loved and cared for her with grace and a sense of duty. Please let yourself remember the good times and be proud of yourself as a daughter.

By pikleine On 2009.06.21 19:32
Pearly4 I am so sorry for you loss. Do not sell yourself short you did a wonderful job and made a lot of sacrifices for your mom. You did the best you could and you were there for her. God Bless you and take care of yourself.

By LOHENGR1N On 2009.06.22 00:20
Pearly, My condolences to you and yours on your Mom's passing. Pearl, You did the best you could and your Mom knows this and it was enough for Her. Don't be hard on yourself. Incase your Mom didn't get the chance to say it enough, please let Me say it for another Patient, thank you, thank you for the sacrifices You made taking care of Me you did a wonderful job and I'm proud of the person you've turned out to be!

You and Your Mom, sometimes bumped heads or were cross with each other, that's only normal Pear, we're humans all of Us and throw Parkinson's Disease into the mix and well......We all know how that complicates matters! Pearl all that is forgiven, You know that, it was Mom, Who taught you to forgive and forget. Pearl My thoughts and prayers are with You, in this time of doubt and grief. May G-d send Angels to console and comfort You and Yours. May they wrap You in wings of safety and strength, guiding Your feet along this path of morning, lighting to way to inner peace. Remember to be easy on Yourself Pear, take time to heal, laugh when you can, cry when you must and heal in time my dear friend.

By gilly On 2009.06.22 00:24
My sympathy to you and your family. I remember feeling guilty that I was not with my mothaer when she passed. I think it is natural to feel that way for whatever reason you can imagine. You really know that you did your best. Your mom went peacefully without the terrible things that you had expected. How fortunate she was. You were a blessing to her.

By Pearly4 On 2009.06.22 03:19
You're all very kind. It was a long hard day, full of decisions, phone calls and Kleenex but I still can't seem to rest. I've come back to your messages periodically through the day for support and understanding. and will through the coming days as I cope with things. No one can understand more than you guys. Thank you for thinking of me and my family.

By annwood On 2009.06.22 07:25
Good Morning, Pearly4
I know what you are going through. Right now you are running on nervous energy and trying to figure out what to do next. Suddenly your entire life is different and you don't know how to act without all of the old pressures and time schedules. What to do with everything, including yourself. In a few days you will "crash" and find that you are totally exhausted. It may take several weeks or even months for you to catch up on your rest.

The care of your mother was all consuming and suddenly you have time again but you won't know what to do with it. Months before that knot in your stomach goes away. That feeling that something "has" to be done.

You will mourn the loss of your mom but you will have the comfort that you took such good care of her. Yes, you may have been cross, said some things you wished you hadn't, feel as if you should have done more - these are normal feelings but remember you were there for her and you took very good care of her under awful circumstances. Remember that she knew that and also remember that it was PD making her behave the way she did and not your mom.

I thought of you all day yesterday. I knew the shock that you felt because we never quite believe it is going to happen. This disease always wins.

I don't know your level of faith but I believe that, like my husband, you mom is in a better place and rid of all this PD crap. I hope that from time to time you feel her presence and her reasurance that you did all that you could and more than most would have done. The pain and grief will lessen and you will remember the good times.

I hope that you will continue to find comfort on this forum as I did. We are all friends united by a life experience that many are unable to understand.

It is now time for you to rest, regain your strength and begin a new phase of your life.

By WitsEnd On 2009.06.22 09:01
You did everything you could and you should take comfort in that now. There is no good way to die, but to go to sleep and just not wake up has to be one of the best ones. I hope I will get to do that when it is my time.

Hang in there. Many prayers and thoughts are coming your way.

By truckette22 On 2009.06.22 12:01
So sorry for your loss, but you did all you could. At the least you kept her at home and was there for her every need. Stay with the forum and you will find comfort.

By rajenriver On 2009.06.22 16:28
Wow, so fast. A blessing that she passed in her sleep, but no opportunity for goodbyes. Very bittersweet.

It was such a shock to see this post and completely unexpected. You did do your best and your actions with how you and your husband supported (and put up with ) your mom show how much you really loved her. I am sure that she knows that know!

Prayers of comfort being sent your way!

By WitsEnd On 2009.06.22 16:48
The hospice folks told me that it wasn't uncommon for the people we love to wait until we are out of the room or occupied with something else so they can slip away. They said that perhaps sometimes they wanted their privacy and to concentrate on their journey....and sometimes they just love us and want to spare us having to see them leave.

I know you probably are going to want to beat yourself up some--that's natural-- but don't. If the hospice people are right, then the way things happened was what your mom wanted.

God bless.

By Mary On 2009.06.23 12:40
Pearly4, I am so truly, deeply sad for your loss. Even though we have never met, I consider you a friend and truly care for you.

I hope you will stay with us as you heal and beyond so we can continue to learn from you. I find you to be a wonderful source of comfort for me on this forum.

I hope that my father dies in his sleep and I never have to make the decision to put him in a nursing home. My greatest fear is having to tell Dad he has to go to a home, I can't do it anymore, and then he cries and begs. I pray he passes before that time. Dad's quality of life is truly gone now no matter what my efforts. Also, as far as your guilt, well, caregiving and guilt should be one word as far as I'm concerned. People tell me how wonderful I am caring for Dad but I don't want to do it most days. And that does not make me wonderful. I also worry when Dad passes I'll feel more relieved than sad.

This is all so very hard but I feel blessed to have gotten to share this journey with you and the others on the forum. Hugs and blessings to you, Mary

By sube On 2009.06.23 13:52
Pearly4,I don't post often, but read a-lot. I am so sorry for your loss. I actually read it a couple of day's ago, But had to think about what you said. I believe you did everything possible ,And I don't know how you wrote such a heart warming letter.I don't think I could of done that.Your honesty about your feelings was beautiful. I believe in GOD,and I believe that he never puts more on you than you can handle,You were at witts end, maybe, just maybe he saw you struggling and decided to take your mom home,You didn't have to make those decisions that we all face, And your mom no longer suffers with an uncertin future.My prayers are with you and your family,And to repeat what others have said,Give yourself a break,Do you not realize that we all say and do things that we regret? This is such a hard road to walk,Most will never understand,Only those of us that must ,because we would'nt wish it on Sube

By Pearly4 On 2009.06.23 13:52
Once again, thank you everyone. I continue to check back for strength and comfort and just in case anyone wondered if their post really matters -- yes, it does! Each time I come back with another doubt or question or emotion boiling over I find a post specific to my issue of the moment -- it's amazing how much each of us has to offer the others at all times.

By joannek On 2009.06.27 10:17

Im sorry to hear about your loss, I dont post usually I often just read, but I understand how you are feeling right now. My Mother passed away the 1st of June, 3 weeks ago, she too had PD and died in her home in her sleep lying next to my Dad, her fulltime carer. He took her to the toilet an hour before, then assisted her back into bed as usual.She passed away near him in her sleep. He noticed half an hour later as he rolled over to ask her if she is okay, as she was very quiet, and she at this point was gone...
For the first 2 weeks, I felt digusted in myself for all the times I was impatient and annoyed with her, as she had changed immensely in character with PD. Though only the last couple of days have I started to remember all the lovely memories with her, and all the love and care I shared with her as well. I think it is very common and normal to feel guilt at first. I'm also pleased my Mum didn't suffer or die in a hospital with tubes and machines keeping her alive. She died in her home, next to her soul mate, my Dad. And I can now say, as much as I miss her, I'm pleased she didn't suffer at the end of her life, and that she is now resting in peace.

By lurkingforacure On 2009.06.27 18:29
I have resisted posting because well, I hate reading that yet another person has lost the battle to PD. It just makes my husband's fate so much more in my face, despite how optimistic and upbeat I try to be. But everyone is right, this damn disease always wins, and in the course of the battle it destroys someone we love more than ourselves. What could be worse?

I too am very sorry for your loss. I am sorry PD won again, that the science wasn't in time, and that another family was rocked by this disease. If I sound bitter, I'm sorry. We have had several losses on this forum recently and I mourn for and with each of you as the friends we have all become here. It really sucks.

I am grateful for you that at least your mom passed in her sleep, in my view, that is the way to go. I know I would not want my family actually looking at me as I drew my final breath, and no doubt even in a mentally compromised state there are many who feel the same way. I also think our loved ones try to spare us that final moment, which I believe gives them comfort.

I cannot imagine the rash of emotions you are feeling right now, but you should take comfort in the fact that your mom is no longer suffering, and that you did the best you could, and more than most would do. I hope those bring you peace and comfort. Prayers.

By walkinthewoods On 2009.06.27 21:05
I want you to know that you and your family are in my thoughts and prayers. I am truly sorry for your loss.

By Pearly4 On 2009.06.28 06:56
I thank you all. We've gotten past the funeral and I finally am starting to feel she is at rest. It was small and all family as she had requested and amazingly enough, there was none of the usual family histrionics and blaming going on that I was aware of. There aren't many left which may have helped. My husband, who provided much of the care during the day when I worked, has been a great help and comfort, as have friends and family. I'm still finding myself beginning things and leaving them while I wander around aimlessly, starting at every "thump" or "thud" as if waiting for the next fall, or looking over my shoulder to see if she needs help or direction. I suppose that too will pass with time. As I go through pictures and papers I see how much the disease took from her in these last two years especially.

Yes, I hate this disease and the fact that somehow it has won again. She fought so hard for so long and now she's at rest - able to walk again, read, chase the babies, carry and hold them, bowl, dance and even think, plan and organize without problem and I take comfort in that and all your comments.

By Cindy Bystricky On 2009.06.28 12:10
Pearly4, I just read about your mom. I am so sorry,yet I cannot tell you how grateful I am she went to heaven in such a peaceful way! I pray every day that my husband will go quickly,quietly before he becomes totally disabled. The thought of seeing him in the circumstances so many have described just breaks my heart. But I know God knows best. His mom died at age 102 just as your mom,quietly during the night, although by chance, I was with her, just went in to check. Anyway, as you grieve, try to also be grateful for her. And always remember, you are a GOOD daughter, and your mother LOVED you and appreciated all that you did. God bless you, Pearly4.....

By Pick On 2009.07.09 18:22
Oh wow. Pearly I just read about this.....I don't know what to say. To me at least our situations have seemed so similar and you've been such a support to me over the years.

About your jumble of guilt.....I think about this alot, dreading what it will be like for me someday probably all too soon. Lord knows I'm no Mother Theresa. So I say the following hoping everyone (but especially you) will understand: "Could we have done more? Pehaps. Would it have ever been enough? Absolutely not."

I truly believe your mom is now smiling down on all of us from a better place where her hands never tremble, her feet are always quick and she remains "forever young."

God bless,

By lule On 2009.07.13 04:50
hi pearly4,
I'm sorry about your mum. just know we are in this together.


By SCSally On 2009.07.19 15:48
Dearest Pearly, I send you my love, support, and condolences in the loss of your Mother. My own Mom (with PD) and I have been away on vaction for two weeks. I was so sorry to hear of your loss. It makes me happy that my Mom and I were able to make this European trip because she enjoyed it so much.

As you grieve your dear Mother, know that there are others who care about you and who are praying for your well-being. I know because of my faith, that all things usually work out for the good, even when they seem so tragic at the time. In this period of having mixed feelings, remember that the thoughts you are having, both good and bad, are perfectly normal.

Take this time to celebrate the relationship between you and your husband, who seems to have been a great help in caring for your Mom. PD puts a strain on marriages and relationships. Please take time together to heal your hurts and joyfully think about all the good times you have had with your Mom and how much better her life was because of the care you had given her.

By arlenecram On 2009.07.25 00:14
So sorry to hear of your mom's passing. Our prayers are with you.One day we all will be there---may God be with each one of us!!

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