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?
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!
Hospice helped a lot. Physically they helped my Husband and emotionally they helped me.
Watching him decline after 12 years helped ease the pain, this was no longer the vibrant, smiling, helpful, resourceful man I met and married 35 years prior. This was a shell.
But he was not in pain, he was peaceful, he was calm and he was at home.
I KNOW I did the best that I could have done.
I KNOW he loved me
I still tear up writing some of these posts so while the stabbing hurt fades it is replaced with a duller pain that does not hurt so much. Sort of like when you get a deep cut and it hurts as it heals sometimes the scab gets torn off the pain is there but not quite as bad as the first time, if it happens again the pain is even more dulled. Then eventually you have a scar that will always be there may hurt sometimes if you bump it but it fades quickly.
I told myself that to want him to remain with me was selfish as he would not have liked the way his life was. I told him I was going to be OK I wanted him to say HI to my Mom and Dad, he had never met them to I had a little "talk" with them and told them they better go introduce themselves. I told him it was OK for him to go and be at peace.
It still hurt when he died...and it still hurts but not quite as much.
(ok I can't see much to proof read this so forgive any errors...)
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.
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.
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.
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
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.
I call my father ‘daddy.’ I called him that until the day he died.
Try to to savor every moment. From someone on the other side, you are incredibly lucky to be there still.
We all hope that someday, when we are older, someone (family or close friends) will love us so deeply.
What a lucky man he is, to be surrounded by such warmth and caring, when he needs it.
May God bless you and hold you through this.
Then, as I promised my Mom, for 4 years "we" took care of our Dad before a sister asked me if he could move in with our family due to the increasing level of care he was requiring. My wife agreed that we could do that, so we moved him from another state and I became his full-time caregiver. Tomorrow will be the 8th Monday since Dad died in my arms just 5 roller-coaster days after contracting a "light case of the flu" and one day short of 5 years since we moved him to live with us. (I think maybe when a person is 97 with late-stage Alzheimer's, there's no such thing as a "light case" of anything.) Anyway, this has also been hard and I haven't yet gotten through it, but with enough time I'm pretty sure I will. Do the best you can, prepare for the inevitable, and you'll most likely get through it, too. Best wishes.