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11 weeks ago, My 90 year old gramps who has lived with me for the last 6 years had a major event (heart attack or stroke) but didn’t want to go to the hospital so for three days he stayed in bed and we seriously didn’t think he would make it BUT he did. He has not been the same since but he is alive. Then the last 1.5 weeks, he has gone way down hill. He finally decided to go to the ER and they said his heart is very bad and then the decision was made to set up hospice in our home. He is the most amazing man and we are dreading the day he dies. I am so worried that I won’t be strong enough to handle it when it does because I know I will be with him when it happens. I watch his breathing, twitching, skin color changes, lack of food/liquid, every little thing and I think “is this it”. He wants to go and I am trying so hard to let him know it’s ok to go but I am so sad inside. He spends his days out in the living room with us (alseep 90% of the day) so we get to interact with him and spend time with him. I just wonder how you all do it? How do you work past the anticipatory grief? I finally am at the point where I don’t bring him food/liquids, I leave it up to him to tell us that he wants something (so hard when a day goes by and he ate/drank nothing). I am trying to hard to live in the moment but it’s so hard. Thanks in advance!

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My mom passed on Thursday the 6th. I had been with her the days prior, even spending the night in the room. I played music and talked to mom when ever I saw her awake. The night before she passed I changed her and sang and sat with her until she fell asleep. I slept at home that night I was so tired. When I woke, I checked the camera and her breathing seemed to be the same as it had been for the past 3 days. When I walked in the door I did not hear mom breathing. I found what I thought was a faint pulse, called my husband and he thought the same. Within a few minutes I knew she was gone. I was heart broken she choose to die when I was not there. I then realized she probably did not want me to see her die. She had lost her voice that week. I had prayed with mom her last night and told her I knew she had a journey she needed to go on. I said I would miss her and dad would too. Then I said I would take care of dad and if she wanted to go with her parents and brother I understood. You really never know how much time they have left. My mom had only had one day with drinking very little. I thought she had another few days. When my mother in law passed she told my husband she loved him, then was comatose for a few days then passed. Both my mom and mother in law were very peaceful and seemed content.
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Daughterof1930 Aug 2020
Kaley, I’m sorry for the loss of your mother and wish you peace
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Imho, you are doing a stellar job of caregiving of your grandfather. But as you are dealing with anticipatory grief, perhaps a counselor would be beneficial to you. Prayers sent to you.
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It is one of the hardest things you will ever do.

Play music that brings back fond memories and reminisce with him. You may think he is asleep but he can hear you.

If you are a Christian , just remember the place he is going to is far better than any place this world has to offer.

Having gone through it numerous times I know exactly what you are going through.

You are in my prayers, precious one.
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Share your anxiety with Hospice staff. They are there for YOU also.
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I think you love your grandfather and are scared and worried what is going on. You want him safe and you want to help him. I think this is quite normal. May peace be with you.
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My mother is on hospice for 15 months now. She is 94 yrs old. While I probably was the same way as you in the beginning, things have leveled off and I no longer anticipate the end. We are back to business as usual for over a year now, and hospice comes in and does their thing according to Covid restrictions. My mother is very determined and doesn’t want to go, and I think this is helping her. Her heart is not strong either (end-stage heart failure), but she keeps on going. I couldn’t live always anticipating the worst, so we all just adapted to taking life as “normal” as possible. I don’t want this to be the “long goodbye”, nor do I want any suffering. So we try to make life as light as possible.
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The hospice we used had a phone service where you could call and speak with a nurse at any time of day or night - it was great for discussing concerns about my mom's condition and what I should do that were not major enough to summon the hospice nurse to the house, but that I still needed advice on and reassurance about. I hope your hospice has something like this.
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Zander2011 Aug 2020
They do and I have definitely used it. They couldn’t really always answer me with a definite solution BUT just having them to talk to has been so helpful! It’s like we are all in this together.
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Hard not to watch but that may be whats making him hold on. Let him see you going about your lives. (of course see to his needs). If he sees you going on - maybe it will give him the peace to let go. I am sure he is happy to be surrounded by people who love him. My Mom passed in my home. Only on hospice for 3 days. She absolutely just went to sleep one afternoon. Very peaceful.No drama. I could not be sad because it was so peaceful. (She was almost 104 and only had problems the last 6 months - Blessed)
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Zander2011 Aug 2020
Thanks for the advice :-) We talk all the time and he knows that he is dying and hopes it comes soon. Him and my husband talked about me the other day and my Grampa said that he thinks going through this will be good for me but that I just can’t see it right now. Death has always been hard for me since my dad passed away when I was 5. I do feel so honored though to be able to be here with him and just the closeness that we have got from having to help him in his daily life. It’s been good :-)
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You can offer him small pieces of popsicle, for a bit of a sweet taste and to moisten his mouth. My mom enjoyed this very much in her last couple of days.
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I just walked through this last month with my dad. It was impossibly hard, but I also felt privileged to be there for my dad in his final weeks. I learned to use hospice for good advice on things like when to use meds and what signs of decline we were seeing. My dad was very ready to go, said so often until he stopped talking the last two days. I did a lot of things already mentioned, we went through old pictures, he found them a great comfort, we found any food that appealed to him though he ate nothing his last five days, we held his hand, we read to him, and many prayers were said. To be honest, I fall apart more when I talk so I often quietly cared for him in the last days, nothing had been unsaid, and I didn’t want to be a blubbering idiot so I mostly quietly did the caregiving. Know this, you’re doing better than you think you are, you will get through it, and it’s okay if he slips away without you being right there, he knows your love and is ready. Your grandpa is blessed to have you. I wish you peace
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Zander2011 Aug 2020
Thank you ❤️ All of this from everyone is really comforting and just lets me know I am not crazy or alone for how I am feeling.
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Just remember that this dying time is "part of the journey.". Don't fret too much when he does not eat or drink. His body does not want the annoyance of food and drink. You cannot feed him into staying alive. It sounds like you are doing a beautiful job of helping him through this trandition. You are distraught at th prospect of his dying and you will be devastated when he dies, but how lucky you both are that you love him this much. Grief support groups can be helpful. If you have any belief in an "after," you can imagine that your grandpa is "going on ahead" to get things ready for you when it's your turn.
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Zander2011 Aug 2020
Yes, I rely on him to tell me when he wants food and drink. That way it’s on his terms or around how he feels.
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Dear Zander, you are an amazing woman! You will get through this and be better for it. This forum has given you wonderful advice and also much support from people who understand exactly what you are going through.
I was with my grandmother the last 12 hours of her life. It was not peaceful at all. She constantly cried out, reaching out to grasp at nothing in the air, thrashing and flailing hour after hour despite my constant talking to try and calm her. Finally I said "Gram, we all love you so much, and you have been such a big part of our lives. But if it's time for you to go, it's all right. We will all miss you, but we understand. It's ok for you to leave us now."
She immediately relaxed and calmed down and lay still. I pulled the covers up and tucked her arms in. She was very peaceful and breathed her last breath an hour later. Sometimes they need permission to go.
My Dad has entered the same stage your beloved Granpa is in. Hospice is involved and very supportive to my Mom and me. As heartbreaking as it is to watch I am finding it a rich experience and an honor to be there through his final transitions.
Your Granpa knows, on some level, that you are there with him. Whether going thru daily tasks, or sitting down holding his hand, he knows. You are doing everything right, and with great love.
Best of luck to you.
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As long as he is comfortable, you are doing a good job. I have taken care of many dying patients as a nurse. Each one has their own "time:" some need to say goodbye to everybody (get friends and family to visit), some need to know that their life work is completed (ask about any worries and help them "complete" tasks), some want to die with others around (and they will wait for the gathering), and others prefer to die when they are alone (and they wait until everybody is out of the room to do so)... I had a patient that was Catholic and she waited in a coma until she was given last rites. The sweetest one was a husband who was dying and he and his wife said their goodbyes over and over as his heart failure waxed and waned and he slipped in and out of consciousness. All this to say, relax. Enjoy time with your grandpa. Say the words of love you need to say. "It" will happen when it is time.
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All you can do is keep him comfortable.
He won't live more than a few days without any liquid.
Hopefully he'll just go to sleep and nit wake up.
Spending time with him is tge best you can do.
I took care of my sister the ladt 3 months of her life and I never regretted having this time with her.
She told other's that tokd me later, that she felt safe and loved.
Prayers, I know how sad this is.
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Yes, it's very hard. Maybe harder for you than it is for him. Hospice workers should also be able to counsel you. You are an amazing and loving person. Keep your love for him in your heart and remember that we don't live forever. Let him go to his next phase.
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I can only cry reading through all these comments
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Zander, you are doing an amazing and compassionate act by caring for your dear grandfather in his final days, so please do try and hold on to that thought. It is very very difficult. It sounds from your post that you understand the end of life signs and that is good, as it’s helpful to realise that this is normal at this stage of life - although still very distressing for you. Can you speak to the professional caregivers if you have any questions or want reassurance that what you are going through is normal, although by no means easy? During my father’s final days last year (he had hospice at home too) I found that talking to the professionals really helped me to understand what was happening. I remember making him soup and then being very upset as he was beyond eating or drinking anything, but then I understood that this was fine, he didn’t need anything at that stage. When he was asleep/unconscious, I held his hand, mopped his forehead and told him everything was ok, whilst feeling I was living in some kind of parallel universe as everything was so surreal. Your anxiety levels will be through the roof right now, made worse by your (understandable) watching for signs that he is going. It’s very hard to focus on anything other than the worry and anticipatory grief, but do you have any old photographs or other memories of his life that you can look at whilst sitting with him, whether he is asleep or awake? This can help you focus on something more positive whilst still caring for him. If he is able, he might look at them with you. If not, it is giving you something mindful to do. You have my sympathy as things are very tough for you at the moment, but be comforted by the fact that you are giving your dear grandfather so much love and care in his final days, so he is blessed to have you with him.
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Zander2011 Aug 2020
Thank you so much! I guess I just feel alone and needed some advice and you really helped. Hospice has been really helpful, right now they are coming out twice a week and that will increase if needed but its nice to be able to talk to them when they come out or call when needed. I did find some pictures of my gramma, who passed away about 10 years ago, and was showing them to him. He loved that. :)
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You are going through a very stressful time right now both physically and emotionally. Talk with him, share special memories, for the both of you. Is there a special food that he loved? Ice cream, shakes, mashed potatoes and gravy? He may enjoy eating them if he is able to swallow. The only way to make it thru is one day at a time. You have been on this journey with him for a long time, he knows when he's ready to go on without you, we're not ready to let them go because we love them. We grieve and wish they were still here with us even knowing that they are no longer in pain and if you are religious, in a much better place. When the time comes, hospice is wonderful, if arrangements have been premade, they will contact the funeral home for you, no need for an ambulance, police and coroner. They also continue to support you with grief counseling and support groups. My heart breaks for you because this is the hardest part of caring for and loving them. Big hugs, job well done, you've done what you could, now it's in God's hands.
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Zander2011 Aug 2020
Hi :) We did set up hospice in our home about 1.5 weeks ago. Its been really helpful. His taste buds are "not doing the job" as my gramps says so when he has a craving for something, we do whatever we can to make it happen...even though we live 8 miles form the nearest store ...basically what grandpa wants, grandpa gets. Love him so much. My dad, his son, died about 36 years ago when I was 5 and we talk about how jealous I am that he will get to hug both my gramma and my dad. He has been such a rock for me, my whole life, and its strange how the the roles are reversing. Again, thanks for your advice!
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When going through this with my mom, we took guidance from hospice. The most difficult thing that was suggested to us was to let her know that it was OK to go. I was with her when she passed. I could not be in the same room with her without watching her. She passed peacefully ..
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Zander, we are so much stronger than we know.
Be with him, talk to him and enjoy the time you have now.
Bring him food and drink weather he asks for it or not. He may not realize he is hungry or thirsty. Offer anyway. And if he is not drinking at least moisten his mouth using a swab.
Please talk to Hospice and see what they have to say. They usually have people that will sit vigil so you do not have to be alone with Gramps when he dies.
you will be just fine, you are strong enough...
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You are obviously very strong and you will be okay.

Tell grandpa how very much you love him and how very much you will miss him but that you will be okay because you know that he will always be watching over you.

I am sorry that you are losing your grandpa. May God grant you grieving mercies and strength during this difficult time.
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Zander2011 Aug 2020
That great advice! Telling him that I will be ok, I need to do that. I think he knows but saying the words are probably what I need to to do.
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