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Dad is 96 with advanced dementia/alzheimers. Until two weeks ago he was stable, but suddenly diagnosed with pneumonia and possibly a small stroke. He lives at home with a wonderful caregiver and my sister and I have managed his homecare for many years. Hospice became involved just a few days ago after his sudden decline. I thought I was prepared after his long illness, but it is so awful to witness him slowly dying at home. Any advice on how to get through this?

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We had my husband's Dad [89] in our home for many years. My FIL had been admitted to hospital for complications of a fall and Pneumonia, where tests found a Cancerous mass in his lungs with metastisis (spreading to) his chest wall, and we brought him home on Hospice for the final 9 weeks of his life.

It is very difficult to care for someone, especially if they are bed bound as my FIL was, and so my advice to you would be to rely heavily on every service Hospice has to offer, a 2-3 X weekly bath aide, Social Worker, Ministry Services, Music vollunteers, our Nurses came 2-3 times per week, sometimes more when we had catheter or medication needs issues, just everything they offer, they are your Lifeline, Angels in my book!

Keep visits from friends and family short, you are going to be way to busy to entertain, and remember to keep a strict daily diary/medication log, pain management, diet/food, toileting, BM's, just how he is feeling throughout the day, and write down everything that might need addressing with the Hospice team, as your mind turns to mush when you are so busy caring for your Loved One. Try to stay on a schedule, because it can get very stressful, especially when emotions are running high.

Accept help from whoever might offer it, folks who can sit with him, offers of food and dinners, grocery store runs, tidying up the house, laundry, just everthing as you are so tired and busy much of the day. Invest in or borrow a baby monitor with a camera, so you can check on him when you are busy out of the room. Rest and Sleep!

As for dealing with the actual death of you parent, take it one day at a time, sometimes hourly, and be sure to speak with him about his feelings and your own, make sure that he is able to get anything off his chest that may be bothering him, tell him you love him often, and in the end, tell him that you will be fine and that it is OK to go, as sometimes they are so worried about you, and how you are doing and how you will take his dying. Talk about the happy memories, chat about your childhood (and his), family vacations, his career, things he truly enjoyed about his life, keep it light and fun, not heavy.

When the actual time comes that he is actively dying (the Nurses can answer all of these questions about actual symptoms to watch for), make sure you have and Understand (in advance) the uses of all of the medications you have on hand to treat his symptoms so that you can keep him comfortable, and have your Nurses phone number handy, and Call them with Any little questions you might have, 24/7!

Lastly stay calm, remember your Dad has lived a very full life, 96 years old is a good long life, his body is tired, and it is his time to go. Try to keep things as calm and peaceful as you can, soft music, cool cloths on his forehead, keep his pain well managed always.

If his breathing should get fast, labored, uneven or if he is making gurgling sounds, there is a medication to help with that. Fever, hot and cold, changes in the color of his skin, moaning, excessive sleeping, all of these things are signs that the end could be near, but stay calm, and treat each sign as they come, quietly.

Lastly, some people want you there at the last moment of their death, and others wait to pass when you have stepped away, my FIL was the latter, he waited until I left the room to make a phone call to the Hospice Nurse, and he was gone. It is scary in the moment, but it quickly passes as their death is a blessing, their suffering is over and they are in Heaven with other Loved ones who have passed before them. If Hospice is not there with you, then call them and they will come out and pronounce him dead and make all of the nessasary phone calls for you. Take some time and have a cup of coffee or tea, and breathe until they get there. You do not need to stay in the room if you are uncomfortable.

Remember to take care of you, eat, rest and try to get good sleep. I will keep you in my prayers, and God Bless You!
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Reply to staceyb
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JanThe May 6, 2019
Thank you so much for your wisdom and suggestions. I am trying to take this 1 day at a time. Hospice has been so efficient so far; hopefully things (and me) will be calmer once his program is set.
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I’ve done this twice, and it isn’t easy. Focus on doing the practical things that need to be done, and make sure you get enough sleep to continue functioning. Plan for what comes next – funerals and visiting relatives take quite a lot of organising, and you won’t feel all that efficient. Remember that being there for the last breath often doesn’t happen, and don’t be distraught about it. Be prepared for the difficult breathing at the end, which can be quite upsetting. Try to get enough sleep in the last 24 hours – take it in shifts if you need to – so that you can cope with the next day. Pneumonia used to be called ‘the old man’s friend’ because it was a relatively quick and painless way to go. I hope that is the way it works out for your father. Best wishes to you, your father, and everyone else involved.
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JanThe May 6, 2019
Thank you! I like your idea of planning ahead for funeral, etc. I think that will help me feel like I have some control over something! I also like your "old man's friend" reference. That is comforting to me.
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It's like living in pure hell.  You are dreading the loss of your dad and want to do anything to prevent that, while at the same time wishing his suffering would end. You are simultaneously and continually experiencing two powerful and contradictory emotions.  And the odd part is that they don't go back and forth - you truly are feeling both at the exact moment.  It's enough to make you think that you're losing your mind. But you're not. I am convinced that this is a master's level course in emotional awareness and development...and in being fully human.
 
The only way I made it through with mom was to talk to others who had either been through or were going through a similar experience; your asking this question is very healthy. I cried a lot, was sad a lot, and felt moments of joy when I could touch my mom by holding her, brushing her hair, feeding her or just doing anything at all to try to make her more comfortable.  Even though she might not have been able to understand me in her advanced Alzheimer's state, I would talk about all the wonderful times we had together and all of the great things she had done in her life.

Then I would try to detach for awhile, and feel nothing at all, which gave me time to regroup before the feelings would hit again like a jackhammer.  If I couldn't detach, I would go to sites like this and just read and read before I could let go.

Nothing at all prepares you for this in life. Nothing. I am so sorry that you are going through this, although I have been told that losing someone unexpectedly is worse.  Frankly, I can't imagine anything worse. God bless you.
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Ljanoe May 8, 2019
Thank you. You put into words the deep pain and internal conflict I am having with caring for my mother.
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No one is ever ready to say goodbye. I believe we will see them again on the other side. But that doesn’t stop me from missing them now. There will be a few tears shed. You need to know you did the best you could. This was never about them getting better. It was about making them comfortable and surrounding them with loved ones before they left. Writing down your memories helps. We did a Celebration of Life and read the personal history she wrote several years ago and everyone shared their favorite memories of her. That helped a lot. Pull out your phone and ask questions about their earlier years. That recording will become a priceless treasure. You can even post it in a place like FamilySearch. There are other databases to record your family history too, pick one. They possibly may mix up a few facts, but with dementia / Alzheimer’s their short term memory is having problems, but the long term memory may work fine. Take out family pictures and ask him to identify any without names. He may or may not be able to, but what a special opportunity if he can. Researchers have found that playing good music, easy listening or instrumental can temporarily connect both sides of the brain for a short time. That’s the problem, one side forgot how to connect to the other, but music somehow opens the chamber. If their symptoms are too bad, it might not happen. This worked right until the last week for my mom. She may have only known me for 15 minutes, but it was priceless for her to recognize me for that short moment of time.
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Having a profound faith in an afterlife with no pain and suffering made it so much easier to let dad and my FIL both 'go' They died within 7 months of each other. A lot to go through.

I felt it was a honor to care for daddy in hospice. We talked when he felt like it, sat silent when he felt like it. He often asked me to sing to him. At the end he was so heavily medicated, he was at rest, finally. I would sit by him and just hold his big warm hand. I would pray for him and tell him he could go, we'd be OK. I'd thank him for being the best daddy (ok now I am crying) and told him over and over how much I loved him. He was my best friend in so many ways. I felt HONORED to be a part of his last weeks.

And we were. I believe death is like walking through a door into another realm of spiritual life.

Both FIL and daddy had peaceful passings. So grateful for that.

As far as 'getting over' watching them die---there was NO fear, NO anguish--just the most blessed peace.

Some times I miss him so much--but I miss the strong healthy man he was, not the sick, sad man with Parkinson's. But I am shored up by my KNOWLEDGE that he's just a step away. Many times I feel his presence. I know he's still "there' for me.
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JanThe May 8, 2019
I think it will be the same for me. Thank you!
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Watching a loved one slowly slip away is hard. But you have to remember this is a part of life. Our bodies were not meant to last forever. The deterioration you witness is how our bodies are suppose to be shutting down. The lack of appetite, dementia, immobility, not being able to swallow, and forget how to do simple things. I image you will have a few tears as the shock of seeing your loved one go downhill. Possibly a few prayers for you to have the strength to deal with it all. And when it’s over, the calm of peace that you did your best and they are now happy living on the other side with loved ones who have gone before them. It all depends on their age and their physical condition. My mom was 91 years old, had dementia, was immobile, ate less than a bird and weighed only 76 lbs. Everyone is different. Some are suddenly and others stretch out. I had a bad back and wasn’t sure I could keep changing diapers and lifting her in and out of bed. When she did go, there were mixed emotions. I still miss her, but there is no more pain and she is with my dad who died some 40+ years ago. Your attitude and beliefs have a lot to do with how you handle things. I wouldn’t have traded that time I had with my mom. She didn’t know me most of the time, which is normal for dementia patients. She was on home hospice and as hard as it was at times, it was an honor too.
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JanThe May 8, 2019
I feel the same. It is an honor.
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I have been with more than one family member at the time of death.

This is a privilege and although tough, it is the greatest act of love. View it that way. You will have more strength than you realize.
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Reply to ACaringDaughter
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JanThe May 8, 2019
Thank you for your kind words!
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Wow! This is one of the hardest things you will do!
Let me tell you this... I cried for at least a month after my Mama died. I cried in public, in private, with friends, family, at work, and I didn't care who saw it. They knew I was in mourning. I still cry. I trust in God my Father in heaven and have accepted Jesus Christ as my savior so I cry for myself not for her. She accepted Jesus as her savior so I know I will see her again. I now care for my Daddy and I know that when its time well its time. I will again cry and will again know that I will see my Daddy again. This death thing is not easy but what can relieve the pain a little is knowing that you will see them again!
Blessings
hgnhgn
p.s. as stated in previous posts... get the arrangements done now trust me... I have already done it and what a load off my shoulders. - hugz
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JanThe May 8, 2019
Yes, I agree crying is in order! My crying comes in waves. There will be a huge hole in my life too soon. So hard.
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I have been through it several times. The first was my beloved Daddy. The second was my Mom. The third one that was harder than my Mom was my good friend and co-worker. He was only 57 years old and died with Mesothelioma. My Aunt passed in the Hospital last year and I was in the hospital for 4 days without leaving. There have been others over the years too.

As far as being "easier" if he was in a hospital setting... I found having them at home was easier for me. I wasn't torn between my daily routine and being with them.

When my Dad died, mom watched him at night when I slept, and I had him in the day. I had school age children and their routine wasn't interrupted. I did ask them if they would feel "better" if Grandpa was in the hospital. They said "no, because we can't see him if he is there". They would do homework sitting beside him and watch TV with him. All was calm and peaceful.

When mom died, she was just waiting to go. The doctor gave her 2 weeks to 2 months. After 2 weeks, she said in an angry voice. "He said 2 weeks and I am still here". I reminded her it could be 2 months and she said, "He said 2 weeks". She went a couple of days later.

I guess I want to say, what does your Dad want, what do you want? Keeping busy helps. Try to get rest and eat properly. All the other advice here is great too.
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NeedHelpWithMom May 8, 2019
What a beautiful response! I feel the care and love you have in your heart. Hugs!

I call my father ‘daddy.’ I called him that until the day he died.
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Use the hospice chaplain to help you through this. They understand grief and grief counseling.
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