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califsand

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I found out today that a room is available for him at a nearby Hospice House. He will have his own room with a private bathroom and private patio...it's a big room, all of his stuff and his computer can fit in there. I freaked out when they told me, although they had warned me that it was likely going to happen very soon. The past week has been a rough one with lots of falls, that I have caught him, and my back, neck and shoulders are really sore. Hospice sees that as it being unsafe and they bumped him to the top of the list for my sake I think.

Anyway, I had to tell my father today that he is moving to Hospice in just two days... he is SO mad at me, typing me messages like "I'm not f**king going, staying here, NO WAY" etc. He wouldn't look at me half the day and he's been extremely difficult. I'm so depressed but I know it's the best place for him as he needs more care than I can physically provide at this point. I set up his phone service so we can continue to leave him messages (he cannot talk at all anymore) as well as his internet connection and I've arranged for him to be on an outing while my brothers come over and we move his things there, and set up his room.

I knew that I would be torn emotionally when this happened but knowing and experiencing it are two different things. Why do I feel like such a traitor? I worked hard to get him into a place that not only would provide the best care but where he also would have his own room. This was not an easy feat considering he is on medi-cal and doesn't have money or private insurance! I know it will be best for all of us but his fear and anger really do a number on me. I went to the house today to find out what his room was like and broke down crying! I so seldom cry and especially not in front of strangers but she was so nice and I am so scared, it all hit me.

I really am going to need all of my strength, and all my reserves, to get through the next two days with my Dad. I know that I have to put on a strong face for him because he is terrified and I figure that once he is there and sees how nice they are and how he has his own space, that he will adjust quickly. I just feel like a failure though, unrealistic as that may be, and I'm in bad shape. Any suggestions as to how I can get past feeling like such a bad daughter?

Thanks,
Sandy
 

CindyM

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Hi Sandy- first of all you need to cut yourself some slack! You have already done above and beyond what most people can manage and you will continue to be very involved. You dad is lucky, but of course he is probably grieving his former life so maybe he can't see that right now.

Don't let either your own guilt or his get to you. This is the best decision and when you are able to catch your breath you will be re-energized and ready to face this awful disease with creative energy. Cordially, Cindy
 

califsand

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Thanks Cindy. Actually, today went better than I could have imagined it, especially after how hard yesterday was! He had questions for me this morning about what to expect and because he wouldn't even let me describe the place before he was very pleased to know that he'll have his own room, bathroom & patio. He cried because he's scared and sad, he cried most of the day actually...but he asked lots of questions and sent me emails today saying he loved me. He hasn't told me he loves me in a long time now and that was great. I told him that I'm sad & scared too but really looking forward to being his daughter again. That made him cry too but I could see that he agrees.

Today was his caregiver's last day but he offered to pay her if she will go there each morning and give him his coffee and formula. She agreed to do it for now and then I'll go each day for his second feeding, and again at night for cocktail hour, pj's and tucking him in. I've had the bedtime ritual with him for a while now, even before he moved in here, and told him that there is NO way I am giving that special time of ours up. He cried but seemed relieved that I don't plan to abandon him.

In a way it's almost easier for him to be mad at me but his acceptance today was amazing, I am shocked and proud of him. I didn't think he would be okay with it before moving, especially with such short notice, but we have been telling him that he was on the waiting list because this wasn't safe for him anymore. I'm sorry, I know I ramble but those of you who have stubborn family members that suffer from ALS know where I'm coming from in ways that nobody else can understand. To see them be reasonable about something like this is almost a miracle. I didn't expect it and it's made today really hard, I don't usually cry but he's had me crying with him so many times today...and telling him I'm sorry, I love him, I won't abandon him, I'll see him twice a day, etc....

Overall, this is the best thing that could happen and the timing is right, no matter how hard it is to accept.
 

CindyM

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There are so many ways to provide care. You were wrapped up in the physical aspects of his needs and that is a big job. But he needs emotional support too, and now maybe you two will grow even closer now that you will be able to meet even more of those type of needs. Bless you! I'm proud of you! Cindy
 

oldmoor

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Dad's moving to hospice

Dear Sandy,

How brave you were to make a decision knowing you were risking your father's love and also his anger. I was faced with that several times with my mother, and it is a very painful act.

Your Dad's ability to bounce back,and to tell you he loves you makes it all worthwhile. But the gamble is a diificult one, and you are to be applauded. You truly put his best interest in front of everything else. I hope he comes to feel comfortable there. It sounds like a very nice spot. Think how much more relaxed you will be when you visit him when you are not as exhausted and stressed regarding his safety.

Three cheers for you. Your Dad is very lucky to have such a devoted daughter.

My best to you and your pop,

Mary
 

landscape

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You've made such a good and well thought out decision about your father's care, Sandy. This must have been an incredibly difficult time for you. Your understanding of your father's fears and the reassurance you have given him must have had a major part in his acceptance of the move. Be proud of both of you!
 

califsand

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Well, today was the big day. There was so much work involved with getting his room set up and working with two of my brothers and my sister in law that the day flew by. The Hospice nurses are all incredibly nice and I feel really at ease with them. They are indulgent...something I hadn't expected but that I am very pleased about. My father has a Dr. order for his coffee and also for his evening cocktail of Irish Cream :) When he got there he was cranky but he had been out all day with my cousin and he was exhausted. He wanted to explore his room, make sure his internet and tv were working properly (of course they were!) and grumble and drive me nuts for a while. Eventually I reminded him if he wanted me to wake up early enough to be there in the morning for coffee, he needed to let me go home. He got his sense of humor then and calmed down. I feel okay leaving him, he was ready to do some serious snoring. I set up his baby monitor and gave the nurses the receiver, plus he has a nurses button that can be moved to be by his recliner where he sleeps or at his computer desk. I feel confident that they will be able to handle him and that he is in excellent hands. Whewwww!

They are worried about a rattle in his chest but he can't spit things out that he coughs up and it's normal. It's a little thicker right now, probably due to the fires and bad air here in Southern CA but she was worried that it could develop into pnuemonia... unfortunately that is likely what will happen to him before long no matter where he is, he simply can't spit out the gook that gathers in his chest. They have suction and will try to get him interested in letting them use it. I told them that they may be more receptive to them than to me, he won't even let me clean his teeth.

There was a man there who I had a long talk with. A patient that has cancer and his wife needed a break so she put him there for a 5 day respite. He hadn't been told by her that it was going to happen so he was baffled, he came and asked me if any of it was real. He said that he was told he had cancer and had a surgery, had pain, but he wasn't sure which things were real. I felt so bad for him that he wasn't told what was happening by his wife but I know how scared she must have felt at the thought of it... anyways, this has nothing to do with anything except that it was touching and it showed how important it is to be honest when you're the caregiver. He and I talked for about half an hour and we determined that it is real but that he is okay and going home in a few days. So now, not only will I be going to see my Dad but will be going to visit my new buddy too.

Thanks all of you for your support, it really does help to have people that know how I feel. Nobody around me knows but today they did tell me thank you, something that is seldom said. They did most of the work, with me directing, and they were happy to do it. It's times like these that I remember what a team our father raised us to be and I'm very grateful for it, I know that we are rare.
 

brooksea

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Sandy,

Glad things went well. It sounds like the hospice is a really great place with compassionate people. I know you are relieved to have found a safe place for your father.


Tthank you for sharing your experience, as it helps others who may find themselves in the same position.
 

CindyM

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Sandy- Your dad must have raised a great team! How encouraging it must have been for him to see you all in action. You also touched upon something that I discovered early on: when I go to visit my Mom I also end up visiting quite a few other friends I have made there. The staff have become my buddies, too. In some cases I end up buying small gifts for new babies, weddings, and so forth. Funny how things take a turn sometimes. Cindy
 

califsand

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Thanks for the positive feeback. I do think that us sharing our experiences helps each of us, not just to have a safe place to vent, but it also gives others ideas about how to handle certain situations that may arise in the future.

My Dad must have known that someday he would be unable to talk because when we were kids he started to train us to respond to gestures. He taught us all to watch him out of the corner of our eyes and to know what he wanted by reading his face and simple body language. It seemed like a funny game when we were kids but I am very grateful for it now, as I am sure he is too. I think that I took the best notes, it's been clear over the past few years that I am the one most comfortable with his body language. Fortunately, the hospice nurses have been in this situation countless times and they are catching on quickly. They are VERY eager to get to know my dad and establish relationships with him. That's the guiding force behind why they are there and I have already grown fond of a few of them in this short time. They know when to let family handle things, and they know when to make themselves available. That is a well developed skill because I know from working with children in the past that when their parents were around it was hard to know exactly how much the parents should handle before I stepped in. These guys just know, they have great instincts and it's making me feel much better about him being there.

There were some tears today, I told my Dad that my little dogs miss him and one was acting depressed and he gave me a thumbs up and started sobbing... :( I know he'll be okay and actually, I think he had a pretty good day today. It's time for me to head over there to get him ready for bed now, I cannot believe how exhausted I am. I must have gone there 4 times today for hours at a time, I'm wiped out!

Take care, I'll check back in again soon.

Thanks also for your support, it's really helping me a lot right now!

Sandy
 
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