Hospice

[MountainDon]

What we learned was to question everything. And then sometimes question the response. And for whatever it's worth we held no punches when completing the after death survey. We gave praise and named names and where we were critical we named names as well. Too bad we have no family left to put what we learned to use.

All things considered though, we managed better ourselves with hospice than we would have doing everything on our own.

[CREATIVE1]

I guess what bothered me the most about my experience is that you don't have control over the fact that someone you love is dying, so it's VERY important to control the things you can.  If that all goes wrong too, it really leaves you with unresolved feelings. 

It is really sad that caregivers don't just provide you with what they would want for their own loved ones.  There is a "disconnect" going on there somewhere. 

[fishing_guy]

Sassy,

First of all, very sorry about your dad.  My wife has lost both of her parents also, and is like a ship without a rudder at times.  You lose that anchor point that parents offer, no matter what the age.

My wife's mother had Diabetes for as long as I knew her.  She didn't take good care of herself after her husband died.  When our kids came along (we lived with her), she started doing better, but by then, the damage was done.

She ended up needing Dialysis every other day.  I'ld take her, go back to work, come back and get her, and then go back to work again.  About 3 months after she started dialysis, she got an infection in her foot.  The amputated above the knee, and she ended up in a nursing home for rehab.  I still was taking her to dialysis.

Her one wish...to go home.

We finally got her healthy enough, built a ramp on the house and widened some doorways, etc...
In July, they finally let her come home.  She was home 2 weeks, and got an infection in the other leg.  They amputated that one in September. The new nursing home was not as nice as the first.  In November, the infection had spread up to her hip.

After a lot of soul searching and talking with her family, she made the decision to stop dialysis.  Her only wish...to come home one last time.

The hospice we used couldn't have worked out better.  They brought in a medical bed and we set it ip in the livingroom, because there were so many people who wished to stop by one last time.  They saw to all of her meds and made sure she was comfortable.  All we had to do was take care of her hygene and make sure she was comfortable.

On her last day, she started having seizures, and we couldn't keep her on the bed.  Hospice arranged for space in their hospital area, and her personal  doctor met us at the door, even though it was 10 pm at night.  His first order of business was getting the pain drugs she needed.  When he wrote the first perscription, the nurse came back and said the pharmasist wouldn't fill it as he considered it a lethal dose.  The doctor got on the phone, and basically told the pharmasist that he knew his patients better, and to fill it.  By the end of the night, they were using 4 times the amount, just to make her comfortable.

One of the workers at Hospice told me that she sees that in strong matriarchal types.  They are ready to go but somehow they can't.

In the end, Hospice was a Godsend and the end wouldn't have been pretty.  It really helped my mother-in-law and all of us reach the end that she deserved.

[Sassy]

fishing_guy, I'm glad things worked out for you & your family with hospice.  That's how it is supposed to work...  it's great that you & your family were involved with the last few years of your wife's mother's care & life...  that's something that you will always have.  It's not easy, especially with prolonged illness.  My dad was self-sufficient until 3 weeks before he died.  And even then, it was only the last week that he was too weak to get out of bed....  I thank God for that mercy that he only had a few days of really suffering...  My mom was very sick with congestive heart failure for years but she was determined to take care of herself.  In fact, my dad gave her intravenous dobutamine (helps to support the heart/blood pressure/contractions) for the last 6 mo of her life - it helped her breathe better - the home health nurses were great, they'd come in 2-3x's week - my dad did such a good job... dobutamine was a drug that was only given in ICU when I worked in ICU & the patient was on continuous cardiac monitoring - my how things have changed - and that was 10 yrs ago...

Diabetes is such an awful disease if it gets out of hand...  it really takes a lot of discipline to watch your diet closely...  I know I'd have a hard time with it... the complications are so devastating... 

My dad was ready to go home, he was tired of the struggle - he hadn't really eaten or drank any water for 3 weeks - nothing would stay down...  so our goal was to keep him comfortable - at that point you don't want your loved one tortured & they usually need very high doses of medication... 

When my mom had her 1st open heart surgery, I was still in nursing school & was in ICU as a student - the nurse who was supposed to be my preceptor gave me a book & told me to sit there & read it & went about her business of taking care of her patient... don't know why she took any students if that's the way she felt about it.  After my mom's surgery, I sat in the room for hours with her - the nurse was wonderful - she had spiked, purple hair but she was patient, explained everything to me, didn't mind me being there, took excellent care of my mom & I've always remembered how great she was.  She has been my example of how a nurse should be so i always think back to her & think about how I would want my loved ones treated... 

Tomorrow is his memorial service... 

[Homegrown Tomatoes]

I guess what bothered me the most about my experience is that you don't have control over the fact that someone you love is dying, so it's VERY important to control the things you can.  If that all goes wrong too, it really leaves you with unresolved feelings. 

It is really sad that caregivers don't just provide you with what they would want for their own loved ones.  There is a "disconnect" going on there somewhere. 

Creative1, I think you nailed it right there... there often IS a disconnect.  I have an aunt who is an RN and has been for years, but she hasn't worked much as an RN in recent years because she would get too depressed by the health of her patients (instead of seeing it as an opportunity to make them more comfortable or help them get better, she began to to get very "clinical" around all sick people, even her own relatives.)  For those of us who have to put up with her because she is family, we all tend to get a little irritated when we see the disconnected glazed look come over her.  A distant cousin became very suddenly and seriously ill a few years ago, and my aunt Glenda took it upon herself to go check out her condition along with my grandma, mom, and some great-aunts.  Well, to make a long story short, she came in and began commenting on cousin Nancy's coloring and what meds and how much were in her IV.  Nancy had been unconscious for several days.  Glenda leaned over and told her, "Nancy, it's OK if you need to go... just go ahead and go home."  According to my mom, Nancy sat up, mad as a wet hen and chewed Glenda up one side and down the other.   Basically, her point was that she'd go when she was good and ready, and on her own terms, and none of Glenda's "diagnosis" meant a darn thing to her!    We all thought it was about time someone told Glenda how her condescension and clinical attitude makes people feel.  Before they left the hospital that day, Nancy slipped back out of consciouness and never regained it again, but that ornery thing held on for more than three weeks... probably just to spite Glenda. Aunt Glenda did a stint for a while as a hospice coordinator, and quite frankly, I think she was better at arranging the care than she was at giving it... she arranged the hospice care for my great-grandma on my dad's side, but then my great-grandma died before she ever needed the care. 

[CREATIVE1]

A Buddhist monk wrote a simple little book with great truths and small lessons that made alot of sense to me and gave me some positive direction to take after my loss.  Maybe it will help you too, Sassy. Doesn't matter what you believe, either.  To enhance a loved one's karma and make their transition easier, do good deeds in their name. 

Another thing I do is wear something from my mother and mother in law when I go places they would enjoy.  In a sense I take them with me on trips, musical events, art shows---  I take my father-in-law's pocket watch sometimes too.

Hey, you do what you can.

[glenn kangiser]

He is not the same one who wrote that it was not wise to allow your karma to overrun someone else's dogma, though is he?

Not making fun, Creative.  Your thoughts are appreciated.  Nurses are big on using humor to help with healing, so thought I might throw that in.

[CREATIVE1]

No, not the same one.  And without a sense of humor, none of us could make it through the day.

[Deana]

Sassy, Glen, and family,

Please accept my condolences for your loss. May many happy memories soften the pain. I too have my grandmother in law who is 93 with hospice. They discontinued all medication 4 days ago and now it is just a very sad wait and watch. My heart goes out to you, Deana

[Sassy]

Thanks, Deana... it is hard to watch them get weaker & weaker - you just hope they are comfortable & not anxious & in pain.  My dad was a very strong willed person & was pretty much aware of things til the end - but he went very peacefully with all of us around him so I feel good that his wishes were carried out.  My thoughts & condolences go out to you & your family with your grandmother.  One of my grandmothers passed away at 93. 

[glenn kangiser]

Thanks, Deana.  It is a time when you find out that you have a lot of good people who care in the family.