Helping Those Who Care for Parkinson's Patients
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Will I ever be happy again? Sorry my friends. I feel the need to touch base with normal, clear thinking people. Can you bear with me one more time? Perhaps by putting some of my thoughts on this forum will ease some of the burden. My hope is that it won't increase your own. I'm finding that each of us must handle our grief in our own way and own time. But what if we can't? What if we are unable to? What if it just doesn't heal with time? We're in the 4th week after death and I feel more helpless than ever. I spent the last 10 years of my life loving, thinking, planning, worrying, and caring for my beloved John. I was often frustrated, angry, sad, hopeful, discouraged and encouraged. But the one thing I knew was that I loved him with my whole heart and soul and cherished what we had. Ours was a 55 year love affair and I never want to forget it. I can't escape the awful feeling of loss and the sadness of having to live without him. There is so much truth in the saying that "two shall become one". We truly had become one and were glued together by love. He did indeed take a piece of my soul with him when he died and I'm left with a huge hole in my heart. I've searched web pages and book stores, I've talked to friends and family. I've especially talked to my God and I'm not getting any answers. The cold hard facts keep coming back .... he's gone, I miss him, and my spirit is destroyed by the grief and sadness of this awful loss. I no longer have any reason to get up in the morning. I have no job to do; no purpose in life. I am trying so hard to do what I know he would want .... for me to go on living a life as full as is humanly possible. But I can't find that right path to move me forward. I'm at a complete standstill and know I need help. I'm searching for it but am not finding it. Instead of each day getting better, it just gets worse and the sadness sinks down deeper. . No, I'm not suicidal. I'm 76 years old and my time will come soon enough. I wouldn't have the energy or courage to hasten it. I'm in limbo ... at a standstill ... stuck in place. I am just so very sad and feel like I'll never ever get rid of the pain and loneliness. I feel weak, exposed and helpless and so very, very tired. |
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Thinking of your post and sending a prayer your way. |
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Hi, Punky Your grief and sorrow are very apparent in your post. I just wish we could do more than we are able to do here. All I can tell you is what I did this time last year and hope that it helps you. No two situations are alike but I know where you are now. First, keep posting here. We all want to be there for you and you are not a burden. I continue to post because it helps me to stay in touch with people who were there for me and who understand what happened. I am not ready to give that up. See your physician and explore the possibility of anti depressants. I started on Lexapro and it made things easier. When you talk about not wanting to get out of bed and having nothing to look forward to it sounds like clinical depression. You have been through quite an ordeal and you now have nothing to do. That in itself causes depression. I am not implying that this is all of the problem. Grief is very powerful. The week after my husband died I forced myself to make plans with friends. Only the few that had stayed by us during my husband's illness. I made myself go out for lunch, the museum, garden club, etc. Making these plans forced me to get up and get dressed. Four weeks is not a long time after 55 years of loving someone. It does get easier but the hole will always be there. There are so many times you want to share something and that bed is very big and lonely at night. I switched bedrooms and converted my husband's office to a TV room. I got rid of all his clothes, papers and books so that I wasn't constantly reminded of him. I think perhaps what helped me the most was my faith. I started back to church and volunteered to work there once a week. Our priest was there throughout my husband's illness so I felt safe working with him. There are times when we talk about all of this - he lets me dictate when that occurs. I talk to my husband at times because I believe a part of him is still with me. I know that I will someday be with him again and I also know that he is in a better place where PD is no longer an issue. Get involved in something - church, gardening, volunteer work (hospitals, libraries, museums, etc,). It will be hard at first but force yourself to do it. As I remember you had Hospice and they always need volunteers. Your experience as a caregiver is so valuable to other people. As I said, I can only share what worked for me. I still cry, I still miss him but I am now able to remember the good times rather than the hell we went through for the final three years of his life. Keep in mind that caregiving is exhausting and it is going to take you months to recover. Keep with us - we are here for you. |
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Annwood gave a wonderful response & I agree with her 100%. I have been widowed for over 20 years & I still miss my husband & cry now & then. I wish I had recognized signs of depression in my own situation earlier or that someone had suggested that might be what I was experiencing. I lost my husband to cancer & we were only together 10 years. I cared for him less than a year, I worked full time & had a 2 yr. old to take care of. Even still, I felt life had no purpose after he was gone. Your loss is still very fresh. Grief is a process that each person has to work through at their own pace. There is no shame in reaching out for help. When I finally realized I needed help & started taking Paxil I also talked to a counselor who was a great help to me. If that's not something you would feel comfortable doing maybe talking to your minister, rabbi, etc. would bring some comfort. Please feel free to continue to share your feelings with us. Our situations may not be exactly alike but we care a great deal. Be kind to yourself & take one step at a time. |
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Punky, I don't know if my input will be of any help, because I've never gone through exactly what you're going through (I've not even lived 55 years, let alone had a love affair that long -- remember how lucky you are), but I hope that I can help anyway. What I have been through is 1) suicidal depression, 2) the death of my brother, and 3) being a PD caretaker. No matter what, you MUST KEEP MOVING. Even when it hurts. Make that, "especially" when it hurts, because then you know you need it. By "moving," I mean both physically and mentally. Antidepressant medication may help, but not anywhere near as much as talking with others (either in person or on this forum -- don't you go anywhere, girl!) and physical exercise. Consider getting professional grief counseling. Always keep reaching out for help, and remember you're not going to get it by lying in bed. Oh, and by the way, don't try drinking. I tried that, and almost ended up being with my brother again. As much as I miss him, I'm not ready for that yet! C'mon, laugh! Remember to do plenty of that, too! Keep your chin up; that's the only way you'll see the sun. Keep posting! |
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Punky, You sorrow, grief and pain are plain to see in your written post. You received great suggestions in response. I'm not sure if I'm qualified to counsel anyone in Your position, I don't think We are supposed to get over loss of loved ones. I think we are supposed to at best find some form of peace with the loss. We're supposed to remember and reflect, they say in time we tend to think of the good times and forget or suppress the bad times. How true that is I don't know. I believe remembering bad times and how they were met can give strength also. You can and it is alright to still love John with your whole heart Punky. Try to remember He also loved you and even though He is not physically there His love still is. Your life and love in the battle with Parkinson's taught many lessons, even if the didn't seem like that at the time. You both arose in the morning to meet the day whatever it held. Now may be a time to rely upon that love. Perhaps when you wake and don't feel like getting out of bed take a moment, breathe deep and say today I'm getting up for you John. Then think, what can You do to honor your beloved? Is there a hospital or nursing home that could use a tub of flowers on the lawn or a church? Ask if they would like one. Ask if a school would be interested in helping if you got seeds and potting soil the children could plant them to grow as a class project. (They could even have a field trip to help you plant the tubs and water them.) No green thumb? No problem! Think a couple of bird feeders instead. Four H'ers or scouts would do bottle drive to help pay for bird food. Did John like to fish? Call a couple of his buddies and purpose a memorial fishing derby, (They may jump at the chance to do something in His memory) get some lady friends to bake cookies and sell them to pay for the seeds. These are just some hints and suggestions from my anti- Parkinson's medicated mind. You know what John was like and what He'd like as remembrances. Punky He's still there with you in your heart and mind it's ok to ask Him what do you think, your heart and mind will hear Him. Talk to Your God again, I've found G-d does answer but not in thunderclaps but instead in a still small voice inside. Maybe that's why you posted and got such great advice from lynn, annwood, lostdaughter and Tara? You listened when the answer was try posting on the forum? Punky, You take care of yourself. We wish you the best of luck and come talk to Us frequently We here are your friends always. |
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My thoughts and prayers are with you. I've been away awhile, and yours is the first thread I've read. 55 years, that's a lot of shared life and memories. For sure the last few have been hard, but not hard enough to erase all those good years. I don't think a month of grieving is too much. It's only 1/660 of the time you've been together. Please keep in touch with close family members, friends, and your physician. |
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PUNKY YOUR LOSS IS GREAT AS WELL AS THE PAIN IS.. AS YOU KNOW I LOST MY DAD HOWEVER MY MOM WAS MARRIED TO HIM FOR 50 YEARS... SHE HAD A VERY HARD TIME WHEN DADDY PASSED AWAY... AND THERE WERE SOME MORNINGS SHE TOO WOULD NOT WANT TO GET OUT OF BED... THE PAIN IS SO REAL.. BUT LIKE EVERYONE HAS SAID YOU MUST KEEP GOING FOR YOU AND JOHN WOULD WANT THAT FOR YOU... TAKE IT ONE STEP AT A TIME.. AL HAD GREAT ADVICE FOR YOU AND THAT IS WHAT MOM DID AFTER DADDY PASSED AWAY SHE BECAME INVOLVED WITH THE OUR LOCAL HOSPITAL AS A VOLUNTEER... IT DID NOT ERASE THE PAIN OR THE LOSS OF HER HUSBAND BUT IT GAVE HER PURPOSE.. SHE STILL CRIES AND MISSES HIM DEARLY BUT SHE CAN NOW REMEMBER THE GOOD TIMES SHE SHARED WITH HIM FOR 50 YEARS AND THE PAIN IS LESS .. BUT HER LOVE FOR HIM NEVER LESSENS AS TIME GOES BY.. MY PRAYERS ARE WITH YOU ALWAYS.. PATTI |
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| Ditto what everyone has said, with emphasis on getting out of the house and meeting with friends, anywhere, anything you like, just get out in the fresh air and sunshine. Just take a pair of dark sunglasses with you (always with me, now) just in case. |