Life after hospice at home

Discussion in 'Life After Caregiving' started by pamela112878, Aug 21, 2016.

  1. pamela112878

    pamela112878 New Member

    I am an adult married person with one child and I share a household with my parents. My father received his hospice referral with a prognosis of six months or less three months ago. He wanted to die at home so my mother and I became his primary caretakers (mostly my mother with the diaper changes, feedings and me with the administrative stuff) for the last three months.

    We were advised by the assessment nurse that Dad had entered "the dying stage" and the end of life was very near last week. We've sat by his bed, held his hand, told him we loved him, we'll always be with him and always be together and he'll always be with us. He had a four day rally and sat down at the dinner table with us one last time, called each one of us to his room, told he loved us, to take care of each other, we were good people, and goodbye. After three long months of watching Dad deteriorate in front of us, he passed away yesterday morning at 6:49am.

    Even though we knew the inevitable was death and we had three painful but blessed months in which we could say goodbye, I was not prepared for just how painful his passing would be. I am relived that he is no longer in his sick, painful deteriorating body but it still hurts so bad knowing he's no longer here physically. I can't see him breathe. I can't hear his voice. I can't squeeze his hand and he can't squeeze mine back.

    I told him that we would always be together and he would always be with us, but he feels so gone. I can't feel him anymore. I can't feel his presence. I feel like I am going crazy because if I can't feel his presence or spirit with me, then where did he go? Where is he? I keep seeking reassurance like a crazy person trying to confirm to myself that he is indeed in a better place but I can't feel him with me. He just feels so gone.
  2. griefic

    griefic Administrator Staff Member

    Hi Pamela, thank you for sharing this with us. I have worked in the field of Hospice for almost ten years, and if there is one thing I say to people all the time it's this: nothing can prepare us for the finality of loss. While we think we know what it's going to feel like to lose a loved one, there is simply no way of knowing until it happens- and then it never is what we expected.
    I find most people can't believe how often they still think of the person weeks and months later and say, "oh I have to tell mom about this" and pick up the phone to call, even if mom has been gone for some time. Bottom line we have our parents in our lives for our entire lives until they are gone. You have no idea what it feels like to be here without your Dad in your life and it will take time to learn what this "new life" looks like and feels like. In these very early days as you are moving through this surreal feeling of loss, be patient with yourself and for the process of grieving. I'm hoping here you can find people to connect with who can validate your experience and help you understand that you are not alone in all that you are feeling. Please message me if you have questions about the site. You have found a loving and supportive community to help, and I truly wish you all the best...
    Meghantree and paul tinker like this.
  3. Mark

    Mark New Member

    Hi Pamela - I lost my mom 12 days ago after being her full time caregiver for 3 years and on Hospice for the last 6 weeks. I had done a lot of reading and did "anticipatory grieving" before she passed. But I am completely devastated, disoriented, confused, and a physical and emotional wreck. I start a Bereavement Support Group next week and am looking forward to it even though I have totally isolated myself up to this point. Hang in there!
    paul tinker and Theresevaughn like this.
  4. Sunshine

    Sunshine Member

    I am so sorry for the loss of your mother. During this difficult time, seek God and he will comfort you. Someday, you will see your mother again in heaven where there is no more pain or suffering. A good book to read is "Heaven is for Real". I will be praying for you.
    Meghantree and Brimon like this.
  5. Mark

    Mark New Member

    Thank you for your kind words.
  6. Ellen C

    Ellen C Guest

    Hi Pamela:
    I am so very sorry for your loss. Please accept my heartfelt condolences.
    I lost my Mom in May of 2015 and the circumstances were exactly like yours. She had lung cancer back in 2006, was operated on and they removed 1/3 of her left lung. She did fairly well for 7 1/2 years and then COPD and congestive heart failure took over. It was horrible. Although I have one sibling, I was the primary caregiver. I had to make the very hard decision to get hospice care towards the end. And just like you, I watched my Mom
    deteriorate to someone I hardly recognized. On the Sunday before she died, I went out and got her a dozen perfectly chilled oysters, because she loved them. She ate them all herself and ate them with a smile. And then she did something that she seldom did because she was not demonstrative. She hugged me and told me that she loved me dearly and made me promise that I'd be OK. She died 2 days later.

    I wish I could tell you that it gets easier, but from my perspective, it really doesn't. I lost my Dad nearly 12 years ago and not a day goes by that I don't miss him terribly. He died suddenly at the age of 76 from mesothelioma, which is horrible. And now my Mom. Indeed something happens to you when you lose a parent. It's like losing a chunk of yourself.

    I know you're going to shed a lot of tears and you're going to feel alone. That never really goes away, it just changes. Or rather you change in how you deal with it. It was probably a good 7 years of visiting my Dad's grave, before I could go there without crying hysterically. And then I would visit him monthly and have conversations with him. He is gone...yes. But in my heart he is very much alive. And I try to live my life in a way that he would be proud of. I choose to believe that both my Mom and Dad are watching. And although this may sound like a cliche right now, as long as you remember the love you shared, they are never really gone.
    I choose not to remember my Mom when she started going downhill. Instead I remember how I helped her heal after my Dad died and what a trooper she was after her lung surgery. She even went back to playing golf! And all the dinners, movies and great times we shared. Even the arguments she had with me. I can still hear her voice. Think back and you will find all those memories about your Dad...I'm sure.

    Anyhow, I know I've rambled on here, but I just wanted to tell you that it will never be the same, but you will be OK.
    Cherish the time you have with your Mom and help her as much as you can. She will never forget it and neither will you.

    Take good care~Ellen
    Theresevaughn, Lisa7 and Brimon like this.
  7. Maureen77

    Maureen77 New Member

    So very sorry for your loss. It is exhausting watching a loved one die. Even tho we think we have prepared for it reality is so much harder. In supporting your mother you will find strength. More strength then you ever thought you could have. I am looking at the one year anniversary of loosing my mother. And ya it's still hard. I miss her more each day. So many times I think, oh gotta tell mom this, then I remember and it's like the shock is fresh. I question my choices at the end. Could she have bounced back and had a bit more time. But you just have to believe that the choices you made you made with love. Cherish your mom and be kind to yourself. This has been a hard year. Give yourself time. Hugs
    Theresevaughn likes this.
  8. Sheila512

    Sheila512 Well-Known Member

    My husband died after a 25 year struggle with Parkinson's. The last 10 years were quick deteioration but I had been his caregiver throughout. Knowing someone is going to die does not make it easier, although sudden death is a different kind of shock/grief. He died November 2016 and I am fortunate becuase I can still close my eyes and know I am close to him. I want desperately to dream about him but so far, not yet. We had been together for many years. I went to senior prom with him in 1959. How's that for a long time love affair! Inbetween we married other people but got back together in 1975 and stayed together 41 years. He was my destined love. I don't know that he is in a better place. He is gone and that is my reality. I can't imagine the rest of my life without him.

  9. Sara K Hatch

    Sara K Hatch Well-Known Member

    Dear Pamela,
    I had hospice twice for my husband. The first time he graduated. The second time he was hospitalized with pneumonia, heart disease and sepsis. We were given the option of having him treated with heavy duty antibiotics and beta blocker to see if somehow he would recover. He was very advanced in his Parkinson's disease so my two children and I decided we did not want any intervention with drugs. The hospital gave us the option of meeting with a hospice team which we did. The person we talked to suggested that he be moved to the hospice house run by the hospital. If he miraculously recovered he would be sent home with hospice.
    He was there 3 days and then he passed. We were with him constantly but all 3 of us were there the night before he died. The final stages of dying are really really difficult for the person and family. He was given morphine and something to help him breathe easier. I was holding him when he took his last breath. We all sang to him and then called the funeral home. We got to stay with him in the hospice room for as long as we needed.
    I was in such a fogged state that our adult children had to take over everything including the memorial service. I really didn't feel anything but relief for weeks. But now six month out I am feeling the loss greatly. Whether you believe in life after death or don't the adjustment is probably one of the most difficult times in your life.
    Be loving and patient with yourself and don't expect to "recover" right away. If you can accept the change that will be great hurdle to have overcome. My heart is with you in your endeavor to try to keep going and in time find purpose.
    Beth davies and griefic like this.
  10. Beth davies

    Beth davies New Member

    I was also in such a fog when my husband was at home in hospice. He struggled with muscular dystrophy for years then just started constantly aspirating. I miss him so so much. He passed away June 29.2018. And I agree that 3 and a half months in,this is absolutely one of the most difficult times of my life. And the saddest because I miss my life that I had with him !
  11. Theresevaughn

    Theresevaughn Member

    We had my beloved mom with us at home after her stroke. It was the hardest work I’ve ever known—meds, toileting, meals, falls, an emergency surgery, catheters and all the emotional weight—then suddenly she got pneumonia and went on hospice at home. After she died, there was pure relief for her and us. But now it’s been 7 months and all I can do is cry. I so get it. All that helps is knowing that love is the root of this anguish. Courage friend.
  12. paul tinker

    paul tinker Well-Known Member

    All of these post are so familiar. A ton of weeping in just the reading. For all that we wen't through and continue to struggle with. As painful as it is I would not trade one moment with Kay, not one. The first week I did ponder the , " better to have loved and lost...". That question has been answered. I was actually hit by a bus.This was awhile back. Making a left with two lanes stopped. The third lane was the bus lane and the T-bone collision. I sat in what seemed like a snow globe. Every particle of dust suspended as if in a snow storm. The shock and disorientation are like now. I so agree with the post about the trying to be prepared. It is helpful to have an outline for what is happening. But the real thing, the poster is correct, nothing can really prepare you for the unfolding of what we have all experienced. ( for the record all were OK from the accident less the totaled truck and I drive even more carefully than before )
  13. Sara K Hatch

    Sara K Hatch Well-Known Member

    Hello paul,
    I am so very sorry that you were literally hit by a bus especially after such a loss after Kay way gone. I lost my dear one of 46 years Dec. 2017. I decided to host a one year memorial for him. My daughter helped me decide what we should do. It included a slide show of him, music and prayers. We invited just a few friends to share his memories with us. It was a quiet observance but very meaningful to me.
    There is a hole in my heart from his not being here but I do truly feel "watched over" and protected by his angelic presence. I have a very strong belief in the afterlife and that he is able to be with me in spirit. I am doing all that I can to make my life purposeful and happy in his memory knowing that he would not want me to give up or give in to my grief. Each day is different and some days are more difficult but I just keep pushing myself to keep going as best as I can. I count my blessing every night when I go to bed and thank God for letting me live this day and for all that I have. Life MUST go on. I believe that we are here for a purpose and we can find many ways to be helpful to others.
  14. paul tinker

    paul tinker Well-Known Member

    Sara I hope your memorial was rich in memories and closeness. My Hospice literature has at least 50 ways grief may present. Ritual is one. I just came home with fresh flowers. I lite the candle and I talk to her. Like you I have to believe that someone so beautiful as our partners must continue. I am happy you had those 46 years. I also feel joy in your sense of purpose. In a letter I wrote to Kay's brother and sister was the part about, " We shall mourn her as long as it takes and then we shall honor her". This topic has come up on this site concerning purpose. That hole in our heart may be the soil of our honoring. Best to you Sara and God bless you. Paul
  15. CBB13JJB

    CBB13JJB New Member

    My parents were very healthy, vibrant, independent, and active into their 90s. I started spending a week or so a month with my parents when my mom got quite sick with a bladder infection and my dad needed some help caring for her. She got better but started having a few memory issues. Then my dad had some dementia problems start. My time with them increased to 2 to 3 weeks a month.

    After 2 years, we had to move in full time. Even then they both seemed fairly healthy and needed very little help. We made meals, helped my dad a little with dressing, and were there for anything needed. It was emotionally hard at times but physically easy, since they could get around by themselves. They were in their 90s but always acted young, strong, and smart. Dementia moments come and go; smart and clever as ever then some occasional confusion.

    Then my dad got an infection and was gone within a week! My mom passed away a few weeks later with no warning other than a bit low blood pressure at times which had been happening for several months!

    My family and I have been Chistians believing in God for years, yet at this time I questioned everything I knew. I felt so alone and abandoned. I started reading my parents' favorite Bible verses and then read all I could in the Bible about death and Heaven. I questioned everything and still came to the conclusion that belief in God was the only thing that made sense and gave hope. There was not another alternative. I know my parents loved God and are in Heaven. I prayed for God to show me peace and hope and for me to feel His love again.

    I believe that everyone knows enough about God that they can put their faith in God even on their deathbed if given the chance; so I will never say that someone is not in Heaven, since I do not know their inner thoughts.

    Faith in God gives hope. In the midst of my pain, I do now have some peace.

    Grief is still real. It hurts terribly. I, too, did not feel anything for a long while. My husband and I were struggling to keep up with things beforehand, and it got worse after! We were frozen.

    Though I feel so alone, I sometimes feel my parents' presence almost like a ghost memory. I, on rare occasions, wake thinking I hear them calling or talking to me. Or I see a really clear image in my mind when I look at their chairs or someplace they usually were though I know they are not there. It is painful and comforting at the same time.

    Caregiving has probably made the loss more difficult, but the loving bond was worth it. I am so glad I had that time. After almost 5 years of caregiving, it has been only 6 months since their deaths. The pain is still very deep, but my outbursts of sobbing tears are less frequent and shorter. I guess it is about finding a new normal embracing the memories and being with the few family or friends that let you cry and talk when you need to.

    Everyone's grief is different. Do not let anyone define or change you. You cannot change what you feel or when you feel it. Life would be so much easier if we could! Holding back just seems to make things worse later. Realize that the people who do not understand are the ones with the problem. Yet how do we deal with them especially if they are siblings?

    It is a hard journey we all experience differently. I wish peace and strength and the recovery of joy to all those carrying the burdens of this journey. We are learning together.

    The Grief in Common Facebook page as well as Fibro & Faith have helped me know my grief is normal and have given some hope back. Thank you for sharing stories. You are helping me through some long nights and days.
  16. paul tinker

    paul tinker Well-Known Member

    CBB13JJB that was beautifully written. So heartfelt. Thank you.
    CBB13JJB likes this.
  17. JackieR

    JackieR Member

    I just lost my mother. She only made it 5 days on home hospice. I have that same feeling she too gone I cant feel her. I searched for old voice mails hoping to hear her voice again and thete are none. Im so broken. Sorry for your loss.
  18. CarolineW

    CarolineW New Member

    I am new to this site, so please excuse me if I ramble on. I am currently a caregiver for my 92 year old mum for the past 5 years. I worked in the medical field for 26 years, so being the only girl of 4 , I was the logical choice. I wouldn't have had it any other way as I love my mum dearly. Although I haven't lost her yet, I already feel numb and in a constant state of anxiety and panic. Every day I get up with the thought of "is this the day." I dont get any help from 2 of my brothers and the other one helps as much as he can, but he has had a double hip replacement recently and cannot offer much physical help. He will sit with mum once in a while so me and my husband can go out for dinner, but that's about all he can offer right now. I feel so empty and tired all the time due to her care and needs. Shes completely wheelchair bound and dementia is quickly creeping in. She is still cognitively aware and doesn't like strangers, so paying for help is not an option as I don't want to stress her out any more than she already is. Everyone says "just get help and dont worry about what she doesn't want " I am not that person and I am tired of people making it sound so easy to just have a stranger come in to help. I am just feeling very lost and alone, so any advice anyone could give would be greatly appreciated.
  19. paul tinker

    paul tinker Well-Known Member

    JackieR that wanting to be with them and nowhere close to letting go. When my mother passed all I could think of was how to be with her. Our growing up house was gone. Her growing up place, the family farm was gone. The same with my wife, Kay. Compulsive is not strong enough of a word. I went to all of Kay's friends. People of her more separate life. I just wanted to hear stories of how they knew her. Same with the voice mail. Only one short one from her stay at the skilled nursing facility. There are so many cards that she saved both of us and many others. There are things that she chose. I will spend hours with those and eventually will select the things that hold the most her and memory. Hospice was a God sent. I will forever be grateful to those who so lovingly helped to provide the most humane act of kindness I had ever seen.

    CarolineW there is the work. For me was both the grief of this so important person soon to go. Then the steep learning curve. I can not tell you how many times I said I don't know what I am doing. Then the uncertainty of not knowing how the end will play out. We are always in the day today. When my mom was in a nursing facility. A short stay due to a fall. That stay allowed me time to find a family group home. I met a nurse or social worker who talked about the stages of dementia. Eventually, they will not really know a lot. Hopefully, on some level feel you but the self-conscious part will drift away. Then perhaps you can add some much-needed help'. Just a few hours to collect and recharge yourself. Most people I talk to and my own memory of that time. Even when I thought I was sleeping it was not a deep one. If I heard the slightest sound I was up. So I hope for you some support can give you some space. From your profession, you already know this.

    As always best to you both and all of us.

    Paul M
  20. CarolineW

    CarolineW New Member

    PaulM, Thank you for your kind words. Yes, I do feel I will be able and need to get help when mums dementia gets further along, but even that thought makes me feel so guilty. I know I should be valuing this time with her that no one else will get, but it is so bitter sweet. I am truly grateful to find this site and feel like I am not alone in this journey. All the best to you.