Topic: Hospice at home for Dad

My Dad will be coming home tomorrow with hospice care.  So far getting hospice in place has been the less stressful part of this whole horrible experience!  I would like to get any information from others who have gone through home hospice with their loved ones.  I think it will be very good for Dad to be home, although I'm not sure how much time he has left.

Dad's percutaneous bile drain seems to be filling up with the exact thing that he drank (the other day it looked and smelled like the orange sherbert he had, and then apple juice).  He's not voiding as much anymore, and BMs are only possible with a suppository.  He sleeps most of the time and rarely even sits up and hasn't gotten out of bed even to sit in his wheelchair for quite a few days.  I'm wondering, or perhaps I already know, that these are signs that we don't  have much more time.

Although I am very sad, I am relieved that he and my Mom can be together in their home.  Even if for a short while.  Their 39th wedding anniversary is next Sat.

Does anyone have any words of advice as well?  Just in general.

Thanks to all -

Michelle

Re: Hospice at home for Dad

Hi Michelle,

I am sorry to hear this, but I just went through it all about 5 weeks ago, so I know your feelings and wish no one ever had to do this. That said, it is a gift for you both to spend the final moments together even though you know what is coming. He knows you're helping him, remember that.

Hospice is wonderful. Don't be afraid to call them ANYTIME if something changes or doesn't seem right about his comfort. I am sure your father is glad to be in familiar surroundings. I don't know what you're looking for as far as info. A few (brutally honest) things that I was unprepared for as this process unfolded:

-The intake stops and then voiding stops, the end is near. Or at least it was for my dad a matter of 2-3 days. Hospice will take care of it, but if your dad is eating, he should probably be on Senna or another laxative to avoid impaction.

-He will be unable to swallow meds. Hospice will discontinue any medications other than pain/agitation control, like morphine and atavan. They will give you a liquid of these to administer frequently (every 2 hours). These are absorbed through the mucosa under the tongue and the gums. The frequency will mean a family member awake and nearby 24/7 because one else (hired CNAs for example) can legally administer meds.

-Hospice should also provide a mouth moisturizer (toothpaste like) and some sponges on a stick (lollipop like). They should show you how to wet his mouth and then administer med. Even near the very end, my dad would suck on the sponge to get the water. The body's instincts are amazing.

-Hospice will use the term transitioning (IIRC) to mean that he is nearing the end. They should tell you things to look for, specifically, his feet will get cold first and then calves, moving upward as circulation slows. When hands get cold or your don't get a return of color when you press on his fingernails, it is almost over. He may get very high fever as his body no longer has the ability to regulate its temperature.

-You probably know this, but you should still talk to him. He can hear you . My father even opened his eyes and tried to speak the very moment before he passed.

-His breathing will probably rattle. As his breathing slows, you may think numerous times that he has drawn his last breath, but he will begin again. He may cough a lot as well.

-When he passes, you call Hospice, they declare, call the funeral director, and dispose of medication. They should also arrange for the pick up of any equipment. We had to push that along because as soon as it was over, we all wanted the hospital bed out of the house.

I am sorry if this crass, but these were the things that I hadn't given thought. Your parents appreciate this so much more than they can ever say. Also remember that regardless of how he looks or how you may feel, Hospice will keep  him comfortable and pain-free on his journey.

I'll keep you in my prayers,

Jan

Re: Hospice at home for Dad

Jan -

Thank you so much - this was the exact information I was looking for. 

I do feel like it's an important time for us to be together.  His comfort is the most important thing right now, and I suppose Hospice is the best for that.

I'm sorry that you had to go through that as well, and such a short time ago.   But I appreciate so much that you've shared your experience with me.

God bless you and your family-
Michelle

Re: Hospice at home for Dad

If there is a bright side to this, you seem to be over the physical hurdles. It is so challenging having a quasi-ambulatory patient at home. It seemed we stayed one step behind in getting CNA's in to help, getting equipment (porta potty, wheelchair), etc.  when Dad was still somewhat aware and mobile.

The other thing I did not mention and it was the most bothersome for me was his dementia. Dad was very confused for his last few months. We had everything tested and nothing came up. It is so hard because a man you have always known to be your strength and remember being vibrant, no longer exists.

My best advice is to catch him awake and say everything you want to say.

Please keep us posted.

Re: Hospice at home for Dad

Jan -

The first day home was interesting.  Dad suddenly decided he wanted to go to the bathroom in his own bathroom.  Got the walker and my Mom took him and then he couldn't get up and couldn't breathe.  It was a flurry of trying to  hook up the oxygen tank and getting the wheelchair open.  Needless to say, he didn't try that again.  He's been in the bed most of the time - his urine output is practically nothing (meaning nothing for several days, then a little, etc.).  He is still drinking and I heard that he ate a little bit this morning, which is surprising to me. 

The hardest part is his anxiety, but they seem to have that under control as of yesterday.  He is in and out of it, which is also hard.  He's not the Dad I remember - as you say in your post above.  He wants no visitors except for me and my Mom. 

I am stuck between wanting to hold on to him and wishing he would just go to sleep and pass peacefully.

The hospice nurse on Sat said she thought he had a week or less.   I don't know what to think.  I do believe that it will be soon.

Re: Hospice at home for Dad

Michelle, First off let me tell you how sorry I am that you are having to go through this.  From my own experience, this was the most difficult time of my life.  I am so glad that you have Hospice there to help you.  What a relief it is just to have them to be able to call.  Not having to worry about rushing to the hospital or exactly what to do.  Like Jan said, call them anytime.  I called them so often, and they were so helpful.  Like Jan, I went through this experience about 5 weeks ago.  My mom was able to be at home with us.  She was only hospice about 2 weeks.  You are doing everything exactly right.  Just being there with your parents is the best medicine that you could give either one of them.  I felt exactly as you do, stuck between wanting to hold on to Mom and wishing that she would just go to sleep and pass peacefully.  Isn't that an awful place to be?  I never imagined that I could have those emotions.  For so long while Mom was sick I prayed that she would get well, and then at the end I just prayed that God would take her peacefully, which he did.  At the very end Mom started breathing really hard, so I called hospice and they told me what to give her to help her calm down and our nurse came and was with us when she passed.  Do you have your "care package?"  It has all of the meds that Jan was talking about, the liquid morphine and so on.  Hospice will tell you when to open it and how to use it when your dad isn't able to take oral meds anymore.  Hospice is able to provide everything that he needs.
 
Jan, You did such a fantastic job sharing your experience with Michelle.  I could have written the exact same post.  We experienced all of the same symptoms with Mom.  I am so sorry that you had to go through this.  It is so comforting to have others to talk to who truly understand what we are feeling.  I hate it that we are all in the same boat, but it is true that no one understands how we feel if they haven't been through this.

Michelle, I am so sorry that you are going through this experience, and Jan I am sorry that you had to go through this experience.  We are all here for you.

Love, Amy

Re: Hospice at home for Dad

Hey gals,

I think it is the logistical part of this that keeps us going during these days. For me, it has continued into looking after the administrative details for my mother (SS, pension, insurance, banking, probate, etc). Now that most of that is finished, I am starting to feel the letdown, the "did this really happen?" and "boy, I miss that ole man."

Yes, Michelle, make sure you have the care package. As far as the anxiety, I am not sure what you have experienced, but things like reaching and rubbing fingers or fabric are all signs of anxiety, if those continue, they will adjust his medication. Don't be afraid to ask hospice for anything at anytime.

Good luck!

Amy,  did you get my email? You and I have a good deal in common, I think.

Re: Hospice at home for Dad

Thank you for the honesty of your posts.  It really hurt to read this - for what you've been through & for what I dread I may one day have to go through myself - but I thank you from the bottom of my heart.  I admire you all so much.  I hope I can be as strong as you.

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson