Topic: Hospice care has begun-Dad's experiences so far...

This week marks the beginning of dad's hospice care in the nursing home.  Although we had discussed the possibility of hospice weeks ago, his mental status has deteriorated to the point where I don't think he understands he has actually begun the program.  I met his hospice social worker yesterday, and she was able to engage dad in limited conversation, and he was able to share some of his fears and anger regarding his illness.  Because I am so close to the situation, it is sometimes hard for me to be a witness to the progression of the cancer, so I felt the burden has been lifted a bit by having her come and talk with him.  She was very helpful to both me and my dad, and will be available 24 hours if we need her. 

Dad has not yet experienced any pain related to his cancer.  His main issues right now are fatigue, weakness, lack of strength, confinement to bed or wheelchair, and his disorientation and confusion.  He wants to "get out of here" and "how can they treat people this way" (I think he is referring to the fact that he is in adult diapers and foley line).  Other than his immediate family members, I've seen a significant drop in the number of other visitors.  I think it's true that many of his friends and relatives, once you mention hospice, don't know how to react to the fact that he won't be with us much longer, so they stay away.  At least that's my impression.

While dad is fairly alert, hospice will have volunteers come in and offer pet therapy and perhaps someone to converse with him about his favorite passion - gardening.  "Comfort touch" therapy was also suggested as a way to calm him (there is a technical name, which escapes me). 

I feel relieved at this point that there is a second team of caregivers, besides the nursing home staff, to care for him.  Although the nursing home team has been responsive to his needs, they are very busy with other residents, and it is nice for him to be able to receive some one-on-one care.

Re: Hospice care has begun-Dad's experiences so far...

Jan,

Everything your Dad is experiencing is "normal" for this disease.  My husband experienced much of the same as things progressed. I think you are right about people not being able to handle this type of situation. Fortunately we did have family & a few friends that hung in there & are still here for me now that Jim has passed on. I am sure you will find that the same will hold true for you & also know that you will have all the support you need right here. I am glad you are getting some relief. Take care of yourself, too.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Hospice care has begun-Dad's experiences so far...

Darla, thank you for your words of encouragement.  This site has been so helpful to me.

As an update, I spoke with his case manager today.  She met with him and it was decided to start dad on a very small dose of Xanax for his anxiety and depression.  I have always been hesitant about these sorts of drugs, but when I saw Dad today at my usual lunchtime visit, there was a remarkable improvement in his mental status.  He was more alert, less anxious and even smiled at times.  He was tired after lunch, of course, and after a few minutes of "The Beverly Hillbillies" on the rec room big screen TV, he was ready for his afternoon nap.  I'm happy to say that the nursing home has worked a nap into his daily routine, and his hospice case worker also agreed it's important to stick to a routine, especially what he was used to at home. 

One of his brothers stopped by as he got into bed.  Unfortunately, it was a short visit as Dad drifted off to sleep.  So I encouraged my uncle to visit earlier when he was still wide awake and better company. 

He has been moved to a room closer to the nurse's station, and the room is both brighter, and a tad bigger, and he has plenty of room for all his stuff.

Considering everything, it was a good day.

Re: Hospice care has begun-Dad's experiences so far...

Hi Jan,

Under the circumstances I would say this was a very good day! It sounds like you are relieved now that things appear to be more under control.  Again, don't forget to take time to take care of yourself so that you can be strong for your Dad and remember to come back here for support when you need it.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Hospice care has begun-Dad's experiences so far...

Hi Darla -

You are right - I do need to take care of myself, which has been difficult.  It seems there just aren't enough hours in the day, with dad, work and my family eating up all my time.  I used to walk or bike, but by the time I get home at night I'm exhausted.  I postponed my annual checkup a month today because I've put on weight and feel so bad about myself.  I really do need to spend a few minutes on the bike in the morning because it does give me a boost to get through the day.  I just have to motivate myself.

Enough about me, how are you coping?  Being fairly new to this board, I read some of your background and experience with your husband's illness and then his passing.  I can only imagine what a horrid seven months it was for all of you, and I pray that you are doing well and have the support of friends and family to see you through the hard times.

Jan

Re: Hospice care has begun-Dad's experiences so far...

Jan,

I guess I speak from experience as I was doing the same, letting things go, cancelling appointments etc. As you said, It just didn't seem there were enough hours in the day to focus on anything but Jim & his disease.  That is why I stress taking care of yourself so much to you now.

I am doing OK I guess. Thanks for asking. I go through some really bad times, & then it seems to easy up a little. I am told it is all part of the grieving process.  It seems as if after all the weeks of focusing on Jim & trying to find out what was wrong & getting him better, now he is gone & I have this terrible void in my life. First you are so involved & then there is nothing. I am trying to remember all the good times & that he is no longer suffering or in pain, but it is not easy. I cling to something my daughter-in-law said shortly after he passed away. That he will be in my heart forever. I do have the support of friends & family, but it is this site & the people here who have been my greatest support as they are all going through or have been through what we are now experiencing.

Know that you will be in my thoughts and prayers as you travel down this road that no one wants to travel.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Hospice care has begun-Dad's experiences so far...

If it weren't for this site, I don't know what I would do. Darla, you describe exactly what I feel like. It was a week yesterday, and the pain is so fresh. I KNOW that Butch is better off, but I miss him so. There is this big void in our lives, as you described it. I haven't gone back to work yet - that will probably help me, I suspect. Jan- I am praying for you and your family. I hang onto the thought that I did everything that I could do to ease this journey for him, and try to talk myself out of the "guilts" when they hit me - I should have done this, I should have done that, etc. One thing I have noticed is the silence. There was so much hubbub around here - since he was in our home for hospice, all kinds of people were visiting, all the time. The phone was ringing off the hook, and I let everything go - just like you both have - and now - silence. I understand - people don't know how to handle this - but - we will all get through this, with God's help. Today, I start taking care of me - starting with the mammogram I skipped for the last few months! Also, I bought some real healthy food, and I made a vow to walk the dog more often!

Re: Hospice care has begun-Dad's experiences so far...

Joyce,

I reopened our shop about 1 1/2 weeks after Jim passed away. It was really hard to do, but I figured I had to just jump in & do it or I would keep making excuses not to. It does help some to fill the days, but it is hard to do it alone after having done this together for so many years. The nights are long and lonely and you are right, the silence is sometimes unbearable. We will all get through this. We have no other choice. We have the strength of our loved ones who are watching over us now along with God & everyone on this site to guide us and help us to go on. Just remember, they will be in our hearts forever and that we can do this One Day At A Time!

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Hospice care has begun-Dad's experiences so far...

Hi Jan,
Sorry for your dad's situation, but I'm glad that the hospice team is taking good care of him. It makes a world of difference - just the fact that they recognized a need for Xanax to bring his spirits up, assures me they're really on top of things. The main thing is that he can spend his last days free of pain - both physical and mental - for his sake and yours. You're a great daughter and don't you forget it!!!

As for people not visiting as much, I saw that as somewhat of a mixed blessing. Though it may have hurt my feelings, I think my mother was glad to not be bothered by well-meaning friends and family and acquaintances - she only wanted her very closest family by her side, for meaningful quality time. So maybe it's better that you know who you can really count on in these tough times. The ones who stand by you and your dad are the keepers. And you get to be with him and support him now when he needs you most.

I hope the hospice team continues their great work and your father finds some peace. As everyone else said, try to take care of yourself and don't feel guilty - you're doing all that's humanly possible in an extremely stressful situation.
Many cyberhugs,
Joyce M

Re: Hospice care has begun-Dad's experiences so far...

Just thought I'd add an update on Dad's hospice care -

Things have been status quo.  The fluid buildup that we anticipated when he left the hospital weeks ago hasn't materialized.  However, he has gradually weakened to the point of having to need help feeding him his meals, has tremors in both hands, and can't speak more than above a whisper.  On the positive side, he still remains pain-free.  He eats his meals while in his wheelchair in the company of his friends in the dining room.  His mental status is still being helped by the Xanax twice a day, to prevent anxiety.  I visit with him daily at lunch to help with feeding, and my brother comes and helps at dinner.  His appetite has been great, and he's never eaten better.  The hospice nurse comes by the nursing center twice a week, as well as a CNA.  The weather has been great, so we can even get outside for some fresh air.  Most of the times he gets his afternoon nap.  If not, my brother will catch him with his head in his plate at dinner!

On a more sensitive topic, the worst and most humiliating experience for him now is toileting.  He can no longer make the trip to the bathroom with or without assistance.  He has the urinary catheter, and has to rely on adult diapers for the rest.  He sometimes gets confused and will ask for help to go to the bathroom, forgetting that he is unable.  Of course, as with any nursing home I've visited, patients sometimes have to wait their turns for assistance, and it's depressing to see him having to wait for someone to change him. 

When he left the hospital about 2 months ago, the doctors said he had "weeks" to live, so needless to say, we are amazed and happy he's still with us.  On the other hand, because he's still with us, I can't help wondering if we made the right decision about ending treatments for a "quality of life" approach.  Is sitting in a dirty "diaper" quality living?  I also wonder about all the chemo he had.  He's definitely weaker than ever, but since stopping chemo he's had no further fluid building up in his legs or around the lungs like he had in the hospital.  I am truly glad he's not experiencing the symptoms he had with chemo, but I'm feeling confused as to why doctors use the terms "weeks" or "months" when they really don't know how long someone will live.  I could drive myself crazy with all the second guessing.  I have to confess that I'm feeling a little guilty because expectations were that we only had a short time left, but is still cruising along very well, the selfish side of me wants to know how long he's going to go on this way or, I should say, how long do we have to see him like this?  What does the future hold for him?  So many questions, with no obvious answers, of course.

I apologize if that last paragraph made no sense.  I'm not making much sense out of anything these days.

Jan

Re: Hospice care has begun-Dad's experiences so far...

Jan

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hospice care has begun-Dad's experiences so far...

Jan,

All of the questions, second guessing & what if's just seem to be a normal part of the feelings that we go through when dealing with this terrible cancer that throws things at us so quickly & seems to affect everyone in different ways. I still have times that I dwell on all that happened & wonder if anything could have been done differently & if it could have changed things.  There is no right or wrong. We can only do the best we can do with what we are given to deal with. We never had to deal with the diaper issue, but Jim always wanted to try to go on his own & when he couldn't & need to use a urinal, catheter etc. I am sure it was discomforting & humiliating for him also. It is hard for them to deal with & hard for us to watch the progression of this disease & how it is affecting our loved one. I am glad to hear that he is not in pain & that he is still able to eat. I am thinking of you & your family & hope that you can find some comfort & peace along the way.

Take Care,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Hospice care has begun-Dad's experiences so far...

Darla and Marions -

Thank you both so much for validating my feelings.  You and the others on these boards have been so great just listening.  I don't think there's anyone else that I meet in my daily travels that really "gets it".  It's so good to just have people nearby to just listen.  I honestly am happy that he's pain free and eating well (yes, the food is better than anything he was able to find at home on his own).  So far, the cancer's progression is far less awful than was predicted to me, and not what I expected at all.  So it just goes to show that no one can predict the future.

I will continue to take one day at a time.

Jan

Re: Hospice care has begun-Dad's experiences so far...

Jan,

My heart goes out to you.  I think the hardest part of this terrible disease is that there is no "recipe" or definite progression.  Every patient seems different in how they react to the cancer.

There is a part of me that screams for a "rule book" for making all the right decisions, taking all of the right steps, saying and doing everything the RIGHT way!

It's frustrating at times.  Mostly I've fallen into the process of "doing 5 minutes and then doing the next five minutes.

You should pat yourself on the back and consider yourself for "angel status"  (You already have my vote!).  While we aren't to the point of Hospice care yet, I know it's coming at some point.

It's helpful (but to be honest hurtful) to consider this is coming.  Thank you so much for sharing your experiences and feelings.  Believe me you aren't alone in how you feel.

I will keep you and your family in my thoughts and prayers.

Cherbourg.....(Pam)

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.