My (ex) hospice patient in winding down. Way down.

Miscellaneous and Personal Stuff I Must Share
1

I’m a hospice volunteer and the lady in question is no longer in the “hospice program” but I really like her so have kept up visits. She is in her mid 80s and has congestive heart failure. I’ve been visiting with her since April 2012…she’s a feisty, querulous old lady who used to cut hair for a living and until recently she’s been doing my hair. “Betty” has tons of stories to tell; she in a real-life Pentacostal, snake-handling churchgoer (I’ve taken her to her church services and yes, they speak in tongues and act generally whacked out but the music was cool) who also believes that gays should be allowed to marry, women ought to be able to do any darn job they’re capable of and Romney was a poopy-head so she voted (twice) for Obama.

So much for stereotypes. :slight_smile:

She has been in and out of hospital this last two months, mostly because of excess fluid in her lungs and around her heart. I visited her today in hospital and she was all bundled up with a knit cap and fluffy socks and had no idea who I was. Although she kept apologizing for not being awake enough to “visit” with me; she alternately thought I was her daughter, a nurse, a family friend or her granddaughter. I stayed for about an hour and a half and eventually she recognised me.

I’m sad. Not sure if she’s going to be able to go home again; but she’s a very tough old bird so perhaps. But in any case, she’s much weaker and more debilitated in general than she ever was ten months ago while still in the hospice program and she’s outlived the hospice doctors’ prediction by five months and counting. “Betty” has an impish smile, not many inhibitions left, is a hoot with so many stories and generations’ worth of memories and so much history and yet is just another bundled-up gomer who needs help going to the bathroom and wiping herself.

I guess, hug your elderly relatives, is what I am saying. Her sum is so much greater than her parts or her present.

2

I lost 2 hospice patients during my tenure as a volunteer. One went very quickly. The other I had over 2 years. She was in a private home when I met her; she moved when the woman that owned the home and cared for her complained to hospice about me for talking about sex. Uh, yeah, because she listened at the door. But not well enough. I never brought up the subject, but hell, Dorrie was dying, and if she wanted to tell me about her conquests, what was I supposed to say??? Hospice called me to notify me of the complaint, but I told them to shove it–my patient could talk about anything she wanted to. Dorrie moved herself into another home, and I stayed “on the job.” I did her errands, played cards and mostly listened.

She wanted to die in the worst way, so badly. Which she told us all. Her minister, in an old practice used by people caring for the dying, asked her to make a list of everything she was too worried about to let go. I didn’t know about this list. I did know that during the first 18 mos. that Dorrie and I were together, I told her about my then boyfriend. She decided she hated him. Just about 3 mos. before she died, I broke it off with him. A while later, I met a new man, who I adore, and still live with after these 8 years. She was very happy, although she never met him, because he was from a town very close to her hometown in Ohio, and therefore he was a wonderful person.

When she died, there were about 4 of us at the burying. I introduced myself to the minister and he said “Oh, you’re Lilly!!!” I am. “Well, you were on her list!! She was so happy you met the man from Ohio, she could rest knowing about you.” I feel to my knees on the grass, it hit me so hard.

Hospice volunteering is very very hard; the training, for me, as a newish widow at the time, was just awful, but it’s one of the most completely rewarding things you will ever do, you will never forget your patient, and I salute you.

3

Oh, I am so glad Dorrie had you! I’ve related my dating experiences to Betty and she’s shared back and I tell ya, once old people at the end of their lives start letting convention and inhibitions fall away you realise that the more things change, the more they stay the same…she is a raunchy old broad. :stuck_out_tongue:

Hospice volunteering has actually been easier than I expected but definitely more revealing and profound and mostly unexpected glimpses into people and their families, too.

Still, I think it will hit me hard when Betty dies and I hope it’s easy for her…her family is not very attentive or caring or involved so she relies on outside caregivers a lot for support. She is very aware that her family caregivers regard her as a: a bother and b: a paycheck (from her retirement checks, which will cease when she goes) and while they do take adequate care of her it’s nowhere close to ideal or fluffy or compassionate or really caring.

I see that it is very hard to care for an elderly or infirm family member and these folks can be difficult. The strain on caregivers is considerable and unrelenting. As a hospice volunteer my official role is “caregiver relief” even though in reality I’m giving comfort to the ailing or dying person too.

I guess my main takeaway here is, don’t ever forget that your dying family member or friend is a person with history and meaning and legacy first and foremost, not just a diaper to be changed or some elementary need that needs addressed.

4

I think it is great that both of you have worked at hospices and seem to be the perfect companions for people who are there.

One of the advantages of being that “feisty, care-free, free-spirit” is that you often outlive all of your stressed-out, pessimistic friends and family. The problem with outliving them all is that you really are alone at the end. So I am not surprised these people have some great stories to tell and have made friends, even in their last days.

Just a quick thank you for being there and making those last days something memorable - and hopefully you will pass on their quips, words of wisdom and funny/sad stories to keep their memories and life alive after they are gone!

5

I’ve done hospice volunteer work as well - both as respite for the carers and visiting the patients themselves - it can be difficult at times, knowing that the person is (as you said) winding down, but I had the mindset that I would be a friend to them while they were here. I hope I made their lives a little easier along the way.

I’m currently volunteering at a retirement home/nursing facility as a “friendly face” - I visit with a half-dozen or so residents - and have had two different women (both in their 90’s) say they were “ready to go” - how do you reply to something like that?

I know better than to say “Oh, you don’t mean that” or “How can you say that?” - I usually just nod and say something about having lived a long, full life and go from there.

6

My wife worked in a hospice house that had beds for 16 residents for over a year. What she found amazing was the number of residents who would graduate out of hospice after a while. It was obvious that some where not being taken care of properly at home or in their nursing homes. With proper care many gained weight and had better health.

She loved working at the hospice house; however, it was a 45 minute commute and the pay wasn’t all that good. When offered a job close to home and better money, she had to jump at that opportunity. Now that our kids are all out of college and married, I can see my wife going back into hospice once the home is paid for.

7

Welp Betty has rebounded and was just moved to an assisted living home for rehab…if she can get back to the point where she can get around the house with her walker, go to the bathroom and dress herself, she can go back to her daughter’s house. The woman wasn’t supposed to live past August 2012 but she keeps bouncing back. The woman is a freaking cockroach, ha.

Same here! I do try to say something about how good it is that they are accepting of the circle of life (still makes me nervous to talk about their death directly, I guess) and about the legacy they have created…children, grandchildren, job or military accomplishments, whatever. To let them know they mattered.

I think this is not uncommon, but it may indicate, not so much poor care at home, but how truly difficult it can be to care for an infirm person who needs around the clock care. Especially if the caregivers have jobs, kids and all the typical obligations of modern life. Some people have the means or insurance to get help, or have visiting nurses and home health-care aides in daily, or at least several times a week but this isn’t an option for many folks.

I hope your wife is able to get back into it though, she’s probably doing a world of good for her patients because she cares.

“Betty” is the only person I see at home and the only pt so far I’ve developed a relationship with. I also do occasional “friendly face” visits (often with my certified therapy dog) and have sat with people who are actively dying and non-responsive. They say that hearing is the last sense to go, so I prattle on or read to them or rub hands or feet, just so there’s a possible connection. I do wonder if they hear anything the people sitting with them say.