This is going to be shorter than I want beccause I can not yet type well for very long. At John's care plan meeting last week, I was told that he is eating 20% and less of all his meals. He is described as "failure to thrive" by his doctors. He is completely incontinent and will not cooperate with bathing, shaving, etc. He can become quite violent with the staff when they are trying to help him. Therefore, they're talking about the possibility of having him commited to a state facility. Today when I saw him, ( I go once a week) I could tell a marked decline. He mostly slept through the visit and didn't talk much...was aggitated if anyone touched him. Also , I'm thinking maybe it's time to get with his sister to write his obituary (believe it or not, He's told me a lot of untruths about his past). Also, should I involve his children in our plans for his memorial? I literally have NO FUNDS for an elaborate funeral...I was planning to have him cremated within 24 hours of his death (to avoid having to have an embalming procedure and therefore a casket and funeral). I hate to bring it up to them...they still believe I have a pot of gold buried in the back yard and aren't talking to me.
Jennifer, I am going through just about the same situation with my husband, only mine is still home. We have our first meeting with hospice on Monday. Like yourself , at a young age (i am 53), I currently have medical problems of my own that are escalating to the point that my health is in serious danger if I can't find the time to take care of myself. My family was in the midst of an intervention when I finally had to admit I just can't meet his needs or mine alone. It was a very hard road to be on. We would be celebrating our 25th wedding anniversary next August. Its very doubtful he will make it that long.
My husband had been married twice before we married, with children from each marriage. Ex wives to battle, resentful children , a mother in law with EAOD , and many other factors made an for often rocky road. But I would like to share something with you that I was told yesterday by several doctors , nurses and hospice workers. Life is full of baggage , there are bumps in the road and sometimes it never seems to end, just one hurdle on top of another. AD had changed our loved one. Maybe you can't help who you fall in love with, but you can choose how much of their baggage "YOU" choose to carry. When you write that obit, remember all those untruths were just baggage that we chose to carry and there is no need to explain anything to anyone. As Carosi wrote, don't forget the dashes. The good times that you had between birth and death of someone you lost to AD a long time ago. This John is not your John, this John is AD. And there is much grief that we cannot let go of during this journey. That part of my loss I will let go of, I will grieve for the man I married now and celebrate his life, so that I can let go and heal for the sake of my life, his body is all thats left here. And like yourself, AD takes a terrible toll on our finances. Luckily we bought life insurance to protect each other long before AD came into the picture, just small policies to cover funeral costs and a couple of months adjustment living. I have heard it said that AD patients have one foot above and one foot on earth. Its time to let our husbands find peace and ourselves find life. Yes, My heart is grieving but I just can't carry the weight of his life before me any longer. His children haven' t spoken to us in years, their loss I"m afraid. So I have chosen not to notify them, I wouldn"t even know how to find them if I wanted to. But that is my baggage. You do what your heart says to or if his family wants an elaborate funeral, let them cover the cost. A friend has told me that I should try and find them and let them make the decission whether or not to come. But it wouldn't be a celebration of his life with all the squabbling that would come. They were not there when we need them the most, so its my assumption that they wouldn't be phased by his passing. I intend to have him cremated and his ashes scattered where we Lived Our Life the most. I want his friends and my family to remember him before AD and not the body left here ravaged by AD. With a small memorial service when everyone is ready, because I have began the process of letting him go in my mind so I can be the person he would want me to be, healthy and of sound mind. But he will never be far from my heart.
I have read almost all of your posts, but in my own tortured soul, I couldn't see the computer screen through my tears or collect my thoughts into words till I began to let go. You will be ok Jennifer, really. Your true friends will be there for you. Theres help out there, maybe you can't see it because of all the baggage you"ve had to carry to make it to today. Minute by minute is sometimes how I survive. Just remember that today is the day you worried about yesterday and you made it through yesterday, maybe with some scrapes,tears,fears , and a few bruises, but you made it. And you know what, some times a fresh start is what is best.
I know you have tough choices to make. Everyone here does. Have faith that you will survive and please choose life.
Jen, do what you want but remember it is just a body. What did John want done with his body after death? If he wanted cremation, then do it. If he didn't care you can do what you want or notify his estranged family and give them the option. If they want a funeral tell them they are paying, not you. And if they choose that, make sure the funeral home and all involved know you are not paying - his estranged family is.
When my mom died we didn't even put a death notice in the paper. Her body went immediately to OHSU since she had donated it to the hospital. When my BIL died two years ago my sister just put the death notice - nothing else. Anyone who was important already knew what type of man he was. When my oldest sister died years ago of cancer, I spoke with her a few days before but was not notified when she died - years later when I got a computer I searched online and found out. The same with my oldest brother. I was not offended by not be notified as we were not real close, just saw each other occasionally.
IMO - obituaries, funerals, memorial services, etc are for the living's benefit. For many it is a time for some big attention and nothing more. Others need it as a step for closure. Others have many friends, colleagues, family, etc. that enjoy the time to get together one last time to honor their friend. When I die or Art dies, there will be no funeral or memorial service. I don't want people who won't talk to us when we are alive show up and say 'nice' things when we are dead. If we mean something to them, they should have showed up when we were alive.
If you have a close family, then they are of benefit. I remember when an uncle died the funeral was more like a family reunion - seeing cousins I had not seen in years. On the other hand, when my MIL died it was one of those big New England things - wake, funeral, reception afterwords. I hated it all. I hated standing there shaking hands with people for two days - people I didn't know, she hadn't seen in years that she had worked with, people who didn't want to be there but due to 'protocol' felt they HAD to be there or they would insult the family. (we would never had known).
With you, your relationship is non-existence with his siblings, kids, family, etc. Just a short notice in the paper is all I would think is needed. Do you live where his practice was? If not, then there are no former patients that might care.
In short, don't let protocol or what you may think is expected guide you. You will only resent it. Do as little or as much as you feel comfortable with and can afford. As I said, let his family know after he dies what you are going to do and they have 8 hours to let you know if they want to pay for something more. I bet they don't. But, I bet they will also run you into the ground for not doing something big. Too BAD!!
Jen, glad to see you posting again. I agree with Charlotte that what follows death is done for those who are still living. If you want an accurate obituary, then talk to his sister. If you don't care and would rather not talk to her, don't. If you want his children involved contact them. If not, don't bother. Do what works for you and Ariel if she is still involved.
Jen, so glad to hear frm you. How are you? You have to do what is best for you. You are the wife. Janet is so right, the decisions are yours and you must do what works for you.
One more person here voting that you do what you think is best for you, and for any of your family that is still involved. If they aren't talking to you, you don't have to talk to them either.
stuntgirl, all of the above suggestions are great. Do what you and your lo wants done. You have been strapped in the AD life long enough without further strapping yourself after his passing with unneeded bills that only made the families feel better. This time is for you and him. Not them. They had their chance and if they chose to not be there for the duration of life, too late now. I hope you find peace with whatever decision you make. For me and my dh, we have chosen cremation so that I can always have him close. I talk to angels and dead people all the time so I will be blessed to have him so near forever. This may sound morbid but it isn't and I may sound crazy which I will not deny,,,,lol...... but something has to get me thru this and I choose humor...... God Bless you and give you peace with your decisions..... Have a great weekend.......
WOW! I can't thank you all so much! So much wisdom and support. True friends. I do believe I am facing the end days. I don't think he'll be here this time next year. My family always has a real party when one of our family passes...music, food, food, food, lots of festivity and celebration of life (this can go on for days depending on who is in town!). Few tears if we can help, except at graveside. Not so with John's family and presently, there is no relationship there. My daughter , Ari , and I are close, but I won't discuss my plans about how I'll handle her dad's passing. I'll just do as I've planned. Go ahead with the immediate cremation and a small notice in the paper here and in the two towns where he practiced. Thank you all. Bless you one and all.
Several days after my dh's celebration of life, I plan to say, "Damm, I knew there was someone I forgot to call!" If they are not here for you both now, they don't deserve to be there later.