Lost my husband to Parkinson's

My husband had Parkinson's 24 years, he passed away in my arms November 7 2016 . I totally took care of him the last nine years. We were married 61 years. I am having such a hard time , I think of him all the time. I moved to be near our daughter, but feel like I am in a maize. I am having a difficult time adjusting on the east coast and am trying to decide if I should move back to the west coast. Too many changes and no friends. My daughter works full time so I don't get to see her for very long but maybe once a week.I just want to get through this horrible loneliness, the memory of his many years of suffering is so vivid in my mind.Please pray for me to get through this horrible grief, and about my decision to move back. Thank you.

 

So sorry to hear of the loss of your husband. I can't imagine what it would be like after 61 years. I lost my mother suddenly last month. Her and my father were also married 61 years. He can not be on his own and is now with me. There are no friends or relatives here for him, so I hope he is okay with me. Did you have a lot of friends or family back on the west coast?

 

Yours was the very first post I looked at after joining this group just now. I lost my husband a little over six month ago. He had Parkinson's for 7 years and I was a full-time caregiver to him the last 4. I, too, am having a very hard time coping with the loss. We were married 46 years and had a warm and loving relationship. He was my best friend and we did everything together before he became ill. I have two adult children but don't want to burden them with my grief because they are very busy with their own lives and challenges. I think this group will be very good for me in finding my way through this low period in my life, I do KNOW what you are talking about when you say your husband had PD. It is a dreadful disease and robs the person of everything. How did your husband finally die?

 

I also lost my husband to PD Novermber 2016. He was diagnosed at age 50 and passed away at 73. His decline began slowly and it was the last 10 years that were horrific. He was my best friend, we had been together for more than 45 years. I am coping by listening to my body and soul. I keep his smiling face as my screen saver, and talk to him daily. I bring him up in coversation all the time becuase he didn't jsut used to he in my life, he is still in my life. He has influenced me tremendously. I can solve problems better because I think about what he would do. I smile and laugh at things that made him happy. Knowing this was coming was did not make it easir, BUT, I had the time to research, plan and orchestrate his final days to what he wanted. I was unable to ever feel comfortable at any PD support groups as I left feeling sadder than when I arrived. The onlline support was helpful as is this website. You should do waht feels right to you. But don't make a quick decision about moving . I can't imagine being away from things familiar after he passed. I need to be where he was and try my best to move forward. Your daughter will want you to stay with her but maybe you moved too quickly. Get some counseling...if you are not a group person, get individual grief counseling. Best wishes for an easier time. You will never feel the same, but hismemory will eventually be more of a blessing than a curse of sadness.

 

I lost my husband who had PD in Dec.17. He was diagnosed 7 years ago and he declined pretty rapidly. I miss him terribly and every single day is a challenge as I seem to be in the 6 month slump. I have decided to stay put where I am for at least a year before I make any major decisions. In the meantime I take my sister who has dementia out twice a week and I try to go out or call someone at least once a day. We were married 46 years and he was my best friend. I, too, remember how helpless he was the last year. He died of complications from pneumonia and heart disease. But it was a blessing because if he had somehow recovered he would have been bedridden from then on. If you have good friends and connections and your health is good it might be better for you to move back. I joined a grief support group and that helped quite a bit. I just take it one day at a time and give myself permission to grieve for as long as it takes. I think in time your grief will get better but there is no way to hurry it along. It takes as long as it takes.

 

I too had a husband with PD. He was told he had it in October 2013. He was then told he had lung cancer June of 2017. I cared for him the whole time. I worked too so I hired a nurse for home care the last part of his life. His children did not make it easy. We were married 35 years but was my soul mate. We were always together. Trying to move on but every thing haunts me. His children have pushed me out and that hurts even more. I remain in our home that we built together and I don't want to go. I live next to his mother and she is 92 and she has lost all her sons. My life feels like its nothing but sadiness. He died December 2017 so almost a year and it feels worse now then then. I want some healing and I don't know where to turn. I too have children from another marriage but this man raised them like his own. He is dad to them and his children hate them for it. Need help in trying to figure out where to turn.

 

Dear Katie,
I am so sorry to hear that your dear friend and husband died in Dec. Seems like you have not only lost him but his children. How thoughtless of them at a time like this! I imagine in your current circumstance living next to your mother-in-law who is elderly and probably missing her children must be stressful for you. Are you responsible for her wellbeing? How is her mind?
I am emotionally about where you are. As the first anniversary of my husband's passing draws closer I feel sadder. He contracted some kind of virus when we were all at Thanksgiving last Nov. and he never recovered but developed pneumonia, loss of his heart function and finally sepsis. He was in a hospice house only 3 days.
Right now I am trying to figure out a way that I can move nearer to my children and grandchildren. I think family is the most important element of my life these days. I just finished a grief support group hosted by our local hospice organization and want to start a monthly gathering at my house for the 6 members who attended.
I think what you and I feel is very typical of people who have lost a loved one in less than a year. I try my best to accept my sadness and keep going as best I can despite my depression. I am taking more time for myself and staying at home more and not over committing. grief takes a lot of emotional energy which can affect us physically. I keep a journal and I try to take on life one day at a time. I eat well and get enough rest. I keep in touch with my grown children by text, email and phone. My son 45 seems to be the most supportive but he has two babies under the ages of 2. My daughter is more distant. She is busy with her husband and their 18 year old daughter. All of us live in Indiana which is good.
My heart goes out to you. Know that you are in my thoughts and prayers as you find your way on this new journey.

 

Thank you for responding. My mother in law is of sound mind and she does take care of her self. Her grand daughter takes care of her money and I take care of the property. She is a wonderful mother in law. I have lived next to her for 34 years. His children are doing her the same way. I think it would help if they were more supportive but I can only wish. They only want to fight. My daughter helps but I don't want to always be up in her business. My son is very busy with his work and lives 2 hours away so I don't bother him at all. I hope this online group helps me. and again thanks for responding.

 

i am just now getting in to reply to postings, only got an email today that someone had replied.
I am so sorry for each of you loosing your beloved to the HORRABLE Parkinson's. I have decided not to move back to the west coast, I certainly miss the sunshine, dry climate, a new apartment complex was built here so I decided to move from the apartment I was renting. Hopefully will be able to form new friendships here, it is not easy, I am very active, but find most my age aren't. I started going to a small church two months ago , I had been searching for a small church where the congregation was spiritual filled, and thankfull to finally found a home church to attend. It is coming on two years November 7th that I lost my husband, there hasn't been a morning go by that I haven't woke up and cried. I speak of my husband often, he is always on my mind, never was alone till after loosing him. The loneliness is hard to endure at times, when it is overwhelming I get out and do something, I find walking three miles in the evening with my little dog relaxing. She has been a real blessing to me. I pray one day soon there will be better treatment and best yet a miracle for a cure for Parkinson's, none of the Meds really helped my husband and the side effects were HORRABLE, as the disease. I abided by my husbands wishes of what he didn't want and am thankful I was able to keep him home so I could take care of him. Someone asked a question, The end stage in the last year was the ability to swallow, and the last three years he could barely whisper. It was my faith through the many years, and my Husband love for the Lord through all he suffered those many years was our greatest source of strength. Thank you all for sharing about your loved one, it helps to be amongst others that understand. hugs and prayers to each of you.

 

Hello dear Grief in Common friends,
Taking care of someone with PD just can't be understood by anyone who has not been through this experience. The last year of my husband' life was so stressful. He choked constantly and had some dementia. He could not see very well and most of the time he sat in the living room in his chair. He wore depends 24/7 but managed to get up and go to the bathroom sometimes during the day but not at night. He fell several times but managed to get up except one time and we called his lifeline support team. two policemen came and got him back in bed. He was on hospice for 6 months and then "graduated". He was admitted to the hospice house 3 days before he died.
Since he passed with pneumonia, heart disease and sepsis plus the PD I am happy that he is no longer suffering but like you two I miss him very much and want to be with him again. And moving on and adjusting to a new single life after 46 years is hard. As the anniversary of his death draws closer I feel more depressed. Our children do not live close and there is no one to care for me if I should become ill or disabled. I have been a caregiver for the last 20 years and do no want to be a burden to my children. I hope to move closer to them in a few years before I become disabled.
I am 77 years old, weight 138 pounds, am on a very healthy diet and keep as active as I can with my faith activities, choir and small social gatherings. Big crowds or noisey surroundings make me nervous. I seem to need solitary times and enjoy being by myself. It takes a lot of energy to grieve. There is no right or wrong way and it takes as long as it takes. I am on antidepressants and have been for years. They certainly are a lot of help for my depression.
I have a twin sister who I call almost every evening and that gives me something to look forward to. I have 2 cats that keep me in good company. I live in a condo with neighbors right next door who can help me if I need it and I can visit them if I feel too isolated. I try to count my blessings each day despite the cold weather coming on. I live in IN where it's moderate most of the time.
I think the most important thing to me right now is keeping healthy for as long as I can and keeping my mind active. I try to be of service to others as much as possible. You are both in my thoughts and prayers as you find your way on this new sometimes sad and lonely path. It certainly is a new phase in our lives isn't it?

 

You sound like a very positive person. I want very much to get to that place.
A little about my loss: after a very difficult marriage I finally met someone whom I trusted, after 20 years. We had so much in common, but after a year of dating he became ill. I was with him everyday through the surgeries, about five years of them;open heart (repair of mitral valve, then three hernia surgeries & finally a pacemaker). After the pacemaker he kept taking on fluid to the point of 60 pounds of fluid. After seeing 5 different specialists no one could figure out why. By this time he was in a wheel chair. Finally took him by ambulance to hospital & found a doctor who got the fluid off (15 days) after this he was well. He did very well and followed doctors orders, regular visits. He was the nicest, kindest gentleman who treated everyone with respect. However, he had an ex wife who was determined to make his life miserable through their children (ages 39 & 41) there were no marriages or grandchildren. I watched him agonize over missed dinner & luncheon dates, no answered calls or messages. He became very attached to my adult children, their spouses and grandkids. They mourn for him daily. We had gone to Hawaii with all of them & he so enjoyed himself. One day about six months later he asked me for a bottle of water, drank some & said he had to go to the bathroom. I heard a boom & found him on the floor, gave him cpr until the ambulance came (4 minutes). They got him going again but it didn’t last. The many sad things are that his first wife instructed their children to come & take everything he had at my home that very day. I was in no condition to do this but I did. I was told by his son not to come to the wake/viewing only the funeral. I was worn to a frazzle as my dear lady friend was buried the day of the wake/viewing so unfortunately I stayed away. Just a few months later my youngest daughter was diagnosed with a rare form of cancer. She had a six month old baby. Through her surgeries and for the next 3 years I was the primary care for the baby. My daughter recovered only to have cancer discovered under her liver. Another year of chemo. She is finally on her feet & in remission. Because of these happenings so close together I have not grieved as I feel I want to.
I miss him terribly everyday, my children & grandchildren mention him often. I want to just breakdown & cry but it won’t come. I find myself not sleeping, then when I do I stay in bed till noon. I want to be active, positive and move ahead but I keep throwing my own roadblocks. I did go several times to a grief group, but found they were much ahead of where I was emotionally and they did things like luncheons at different restaurants. I wasn’t ready to be social with such a large group.
Now I am back at step one & don’t know how to dig out. My divorced lady friends have their own lives & dont quite get where I am. I do pray a lot, and at times have spurts of energy to clean and grocery shop. I’m sure there is hope, but I miss him so very much. I truly want to be active and give what I can to others. Suggestions please.

 

Dear N,
My heart goes out to you. It seems as though you have faced a great deal of trauma in your life because of the disunity of family members and caring for your grandchild and daughter. No wonder you are not functioning as well as you think you should. Caring for my husband and being responsible for him during his time of PD took a huge toll on me. I had no help from my adult children in those 7 years. He was in the hospital during that time and got some home health care. He was on hospice for 6 months then graduated. We hired one person to come and help him with a bath twice a week. Every other responsibility fell on my shoulders. He passed last Dec. and I am still not back to "normal". I feel like my emotions have been exposed and I am raw. Now that the anniversary of his death is approaching I am having many flashbacks to the illness he got at Thanksgiving and his admittance to the hospital 3 weeks later and then his passing 3 days after that.
I think we need solitary time to heal. We don't need to take on more than we can find the energy to do. It took me at least 3 months after his passing before I could feel anything like being able to cry. Everyone's reaction and ability to function is different. There are no rights or wrongs and chances are you will always miss him. Learning to cope takes time and patience with one'self. Be loving, accepting and kind to you. If you can find a friend who will listen. In time (your own) things will get easier. Just remember that this event is probably the most traumatic thing you have ever gone through. This is a good forum to come to. Welcome.

 

Dear N,
You have certainly had your share of grief. More than your share. Hang in there....there is really no closure. Just an acceptance of what is. ENjoy your good memories and look at those pictures and remember his favorite everything. He wasn't part of your life. He IS part of your life. He helped make you the person you are. Honor his memory and take care of yourself . Find something you like to do...rock babies in a nursery, walk dogs in a shelter...pass on a skill...share what you My husband always said he wanted to leave the word a better place than he found it. He was successful. H certainly made my life better. Blessing and Peace

 

I have just recently gotten back into the site here. Appreciated all replays to my posting. I m still back east but nothing has changed. I visited my husbands brother,wife and their families twice last year in Arizona, my husband was from there. It was wonderful to be with them all. Really giving thought to move there this spring, I have been here in the east now for three years this coming June. Feel very much alone here, continually ask God to give my heart and mind comfort and peace prayers for all here.