"End of life box" your help requested please....

[Bristolbelle]

As many of you know I work as an activity co-ordinator in a care home. I have been asked to put together some kind of box or kit to try and offer comfort etc to the person and thier families as the end of life approaches. Things that have been suggested are CD's of spiritual and classical music and relaxation. A choice of special fleeces which look nicer than the standard blankets in use, books with nice passages in to read or find comfort from, tissues, if appropriate a Bible or other religious book/ items, lavender oil, hand creams and soft towels so hand massage can be given, mood lights.
Please can you tell me what you feel would be useful, comforting etc. I want to get this right as I will be offering this to people at a time which is very difficult for them. If you do not feel you would appreciate anything like this at all let me know - all you opinions would be very welcome. Many thanks

 

[2jays]

What a lovely idea

What a sad idea

A box

In my opinion

You will never have a box of things that will help

Surely when supporting someone when they are dying or for those who are "left behind" a box of things to support them is impersonal?

Utmost respect to you as you try to help people at this difficult time

But

Why do we need another box

Where has compassion, vulnerability of proffessionals gone? Why do you need a box of stuff?

 

[Canadian Joanne]

My husband stayed overnight in the nursing home when his mother was dying and they had a whole very large kit put together. There was also a big reclining chair for him to sleep in, nice blankets, a lot of different things. I think there were also packaged snacks and bottled water. The things were geared more towards helping the family members but he found it very useful and thoughtful.

I'm sorry I can't remember more but it was 8 years ago now. I do remember how much he liked it.

 

[rajahh]

I agree that a box wouldn't seemto be very helpful. certainlynot to me. What would helpme as I sat with my loved one while he /she was close to death.

Just the odd visit by a member of staff, a bell to push if help was needed, or i needed to go to loo and did not want loved one left alone.

A cup of tea and a biscuit maybe.

The odd head popped round the door to show you are not totally alone.

Jeannette

 

[htl2013]

End of Life box

What a lovely idea, when mum was dying we had a bag that we took in every day that contained a brush, wipes, dry shampoo, a bible and a prayer shawl that the ladies from mum and dads church had knitted for mum. The bag became known as the 'Big Blue Bag' and in a way lightened the mood of the situation and made us smile at a time when sadness threatened to engulf us all. It might not be to everyone's taste but it certainly helped us to cope at the time

 

[Margaret W]

Dear Bristolbelle, I am not sure how close to life's end you are meaning.

I think if you were to put together a box of things, my mother would have been irritated by it. I think I would be too.

I think such a box would have to be very individual. Classical music for those who liked it. Elvis Presley for others, or in my case, folk songs from the Spinners.

But what a person enjoyed in earlier life might not be what they want at the end. I imagine I would just want to drift away with no additional stimulation at all.

It's a lovely thought, but not sure how it would be received by each person.

Love

Margaret

 

[patricia1958]

end of life box

I don’t think end of life box is what a relative needs as they say their farewells to their love one.

It would be nice to have a quiet and peaceful place to spend what time they have. To know that if needed there will be some one there for them. As mentioned by Rajahh before a cup of tea biscuit etc is all that’s needed.

I some times think that people think to much about what material things people require as support from caring people is worth its weight in gold and this can’t be put in a box .

 

[fredsnail]

I think that this is a lovely idea - but I also think that maybe a box is the wrong way to present it at such a sensitive time.

Maybe a basket left in the room without fuss would be better.

Like everything it is very individual but a good general selection of items would be good, and I don't think it would replace the human care from nurses or attention if the bell is pressed as someone mentioned above - I would think it would be in addition to the normal care.

 

[Katrine]

I think it is a lovely idea, perhaps with a different name? "End of life box" sounds a bit unfortunate as we'll all finish our journey in one of those. How about 'comfort cupboard' or 'family resource box'? Something that highlights the gently pampering purpose of this kit at a time when touch, sound and smell are so important. I agree with Fredsnail that it depends how it is presented as well. It might be best to either have a little stock of general things as he suggests, or for staff to bring things in from the special cupboard as needed. I had assumed that this was what you intended, rather than issuing the relatives with a pack!

The dying person may enjoy the hands-on and soothing elements, and the relatives could have something to 'offer' at a time when they are helpless to do anything else. Not everyone needs to do anything actively, but some people will feel that need. Many of us do not find it easy to touch each other, so massage and hairbrushing can provide a focus for this. Music can encourage singing, or just hand stroking or patting the bed. I think it is a great idea to provide some resources so that family can dip in and use what seems appropriate, if they want to. A Bible and a book of meditations and prayers is also a good idea. Reading wise words can bring comfort, and tears, so why not have these resources to hand?

Just a small point about the use of essential oils. Some people are very sensitive to these. Lavender in particular can cause hallucinations. My mum's carers often put lavender bags on her bed and one person even sprayed her pillow with lavender oil. I wonder if it is a coincidence that her hallucations have stopped since I banned lavender from her bedroom? By all means use toiletries with nice smells, but I personally would avoid using essential oils with someone who is so physically frail and sensitive. Just my personal opinion.

 

[FifiMo]

I like the intent behind the idea but as can be seen on here, a box might be accepted by some but not others. Could end up being an expensive ventre if the boxes are just taken home but not used etc. I wonder if perhaps a cupboard that families can be given access to in these circumstances. As to what should be in the cupboard, I think perhaps it falls into two areas. The first could be items that would help those who have perhaps arrived from afar in an emergency type scenario and who are staying at the bedside for however long it takes. Maybe some towels and toiletries so that they can perhaps freshen up or have a shower etc. some snacks/drinks. Then the other area are those things that might be used for the benefit of the person who is dying. I was thinking along the lines of the family thinking of what they could do for the person.. I was thinking of the question "Wouldn't it be nice if we had...." Access to a CD player so we could playmum's favourite hymns/songs/classical music...access to a bible/spiritual books...access to a Chaplin/other person of faith (provide a list do contact details of local religious organisations) ...Access to some books poetry perhaps? Access to some toiletries moisturiser, lip salve etc. Access to items to prepare the body after death (remember for some cultures/faiths this is carried out byte family) ..soap, wipes,facecloths,towel sect.

When my mother died, we didn't know a thing about the area and this must be the same for many families these days. It would be useful to have a folder with local information eg how to find the registrars/leaflets from religious organisations, leaflets from local undertakers, local florists, local hotels etc that provide funeral teas etc. It is difficult enough if you live in the area having to pull all this information together but even worse if you are from out of town. As an example, we could find the church but the organist wasn't available...how the heck do you find one in a strange town! LOL. The answer by the way was to phone round other churches and try and contact theirs!

Please also think of things that might be particular to certain faiths and cultures as these can make a huge difference to families to see that their particular needs have been understood and provided for.

Fiona

 

[danny]

I think it is a really good thing to do. Most people in care homes do die so the more things available to support staff and carers the better. Also, End of Life means different things to different people. End stage dementia could last for weeks if not months dependant on treatment etc. I guess you are getting a box of activities for people who at the later stage of their dementia journey and that is excellent practice.
At the moment I can`t think of anything else to put in a box, may be some different pieces of fabric and textiles and one of those activity muff things may be a good idea.

All the best.

 

[meme]

in your end of life "box"...drugs for pain free journey if required
loved ones holding hand
warm and safe
if no loved ones than a hand to hold to the end


a box is not required

 

[Christin]

I am sorry to be harsh but my first thought was why wait for a nice fleece, couldnt one be given to everyone.

I agree a hand to hold is so important. The offer, to family, of only having to ask is so important. We were given tea, sandwiches etc, even the offer of a bed, but as the days went on what we needed was some reassurance.

In my own opinion, contact is what is needed, but I guess that all families are different.

 

[Witzend]

As many of you know I work as an activity co-ordinator in a care home. I have been asked to put together some kind of box or kit to try and offer comfort etc to the person and thier families as the end of life approaches. Things that have been suggested are CD's of spiritual and classical music and relaxation. A choice of special fleeces which look nicer than the standard blankets in use, books with nice passages in to read or find comfort from, tissues, if appropriate a Bible or other religious book/ items, lavender oil, hand creams and soft towels so hand massage can be given, mood lights.
Please can you tell me what you feel would be useful, comforting etc. I want to get this right as I will be offering this to people at a time which is very difficult for them. If you do not feel you would appreciate anything like this at all let me know - all you opinions would be very welcome. Many thanks

I have to say that when my aunt was dying in her CH the thing that helped most was the extreme kindness and care (to both my aunt and relatives) of the staff. I don't think any box of anything could replace that, or be of much comfort if the care and kindness weren't also there. Simple things like the offer of food when we'd been there a few hours - or even bringing it without anyone asking - were much appreciated.

I'm not saying that certain things, e.g. soothing CDs or massage cream might not be welcome to some people, but I don't think there's any substitute for considerate kindness at such a time.

 

[garnuft]

Yes, I agree with most of the previous posters, the 'box' should contain:
Pain and anxiety relief and good attention to it.
A warm, friendly, caring hand to hold until the end if desired.
A quiet, respectful, comfortable environment until the end.

 

[angelface]

I am not too sure about this box, why keep all these nice things for right at the end.

Maybe they would be better appreciated when the people where not quite so very ill?

I do agree the most important thing is the human touch.

 

[cragmaid]

a hand to hold to the end

...I do agree with this sentiment. Comfort of the spirit cannot be found in a box, but it can be found in a kindly thought. I think your " Comfort Box " is a good idea provided it is perhaps simply placed in the room with a card saying " For your comfort " or similar. I would put in some paper and pens, because I always need to jot things down ( or forget them forever).

 

[Saffie]

Perhaps this might be helpful if the person who is dying has no relatives.
Otherwise, I agree that it is the relatives who know the person and who can provide what is most needed - the touch, the stroke and the kind words.
They will know what song to sing to comfort their dying relation, what to say.
A kindly word, tissues and a cup of tea are all I can think I would need.

I'd hope that the person dying would already have the things around that would bring comfort.

 

[Bristolbelle]

Thankyou so very much....

Firstly I know the idea of a "box" is not the right presentation but that was the idea passed to me so I had to float it as such so that I can take the feedback and persuade others that it is too "in you face" in that format. Personally I would just place items round the room without announcing it at all and just those near the dying person would feel welcome to use whatever was there.
Nice fleeces now! Oh my don't I wish we could do that, I am very aware of how much is paid for people in care but how many of you realise the limited budgets activity co-ordinators work on. My fist home was £70 per month for about 75 residents, this one is £200 per month for 75 residents - we just can;t do it for everyone sadly.
Essential oils - I had no idea lavender could cause such side effects, and will now make sure I consult someone with knowledge of essential oils before I progress on this idea - as well as temporarily at least removing the lavender oil we have in a reminiscence kit we use.
Unfortunately pain relief is one element that I would be completely unable to include a this would be covered by their nursing needs and all medication would have to be administered by a nurse. I know how frustrating that is when you know someone is near the end but in pain because the powers that be have not fully acknowledged it.
"The hand of human comfort" - well nothing can compare to this and I would love to have an "on call beeper" to make sure no one ever dies alone. I know most care homes try to make very frequent checks on anyone nearing the end both in order to alert family and friends and to try and ensure there is a member of staff present if no one else is there to offer comfort.
I have been given this task because it has been noticed that I am a very spiritual person "in touch" with the elements of need and desire as people approach the end - well that was the theory. But what you have all illustrated so well, and I already knew was at such a time there little that will offer comfort every situation is different, and needs sensitive handling.
For now my kit will contain a choice of fleecy blankets, a bible, a puzzle book and pens, a selection of classical/relaxation CD's with personal taste taken into account where possible, wet wipes, moisturisers, lip salve (That was one I had certainly missed but found useful for both my parents on their final journeys), Individually wrapped snacks/chocolate bars. Some relaxation DVD's too as I found my Mum got something form them and would focus on the TV. I will also try and arrange fro an extra chair, pillows and a blanket to be left in the room so relatives can rest.
Knowing the individual and their family/friends is obviously key to this whole idea, and I could not agree more with "human kindness" being the best comforter.
One more thought - I found quite often carer kept popping in when both Mum and I were resting and everything was ok, do you think a little card to hang on the door that says something like "thank you for your concern we are fine at the moment and resting" would be a good idea?
Any further ideas would be great, I appreciate what a sensitive idea this is and all the feedback is truly welcome. xx

 

[meme]

use the fleecy blankets on patients!!! ridic to leave in a box, such a basic comfort...leave anything else on a communal table for people to use if and whenever...and dump your box...