Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[Trey]

Chasing Cars, by Snow Patrol was the good that happened yesterday.  Sent by a MM member.

Each day or two we have to accept change.  We make adjustments and then we must adjust again as what worked before no longer does.  There seems to be no equilibrium.

I used to knowingly say that one can't remain in crises mode indefinitely.  Well, I was wrong.

If two thirds of Medicare funds are spent in the last two years of patients lives, then they damn sure should improve the service of Hospice.  I see why lots of folks come off of it and go back to traditional medicine. The support is simply not there.  The PT guy pops in with a smile and says "do it this way" and leaves.  He does not wait and let you try whatever he did and then you find out you are not as strong as he is.

Our US medicine seems so hit and miss.  It seems in UK you have a lot of protocols in place for different eventualities.  A dear friend would have to private pay for care 24/7 to let her husband come home and they literally would used up their live savings over a period of say six months and they are well off financially.  It is because hospice provides equipment ( not safety rails or any changes to home) like wheelchair, commode chair, hospital bed and hospice provides medications, and a nursing assistant for a quick bed bath three days a week usually, one counseling visit, maybe one more, social worker visit, and twenty minute nursing visit three times a week, the value of which we have not yet figured out.  But NO physical help is the problem.

So,don't get old or sick in US.  It is a dirty secret.  I feel a book coming on.

I love my angel, PN.

Ps Did I mention that Hospice provides no services on weekends? I suppose they provide emergency services, but no scheduled services.

[CLKD]

Every day is a learning curve but you and Don lack time to put any learning or advice into action.  Acceptance is hard.  Maybe one of your new 'neighbours' will have suggestion/s when they next visit.  It's bed sores you need to check for but how to turn Don over  .  We need to be closer!

[Trey]

Hi CLKD, I will massage him constantly to avoid those sores.  We have almost no neighbors as most are gone in the summer and I just don't really know any yet well enough.

Today I must fight to get the MRA and MRI covered so I started by calling my insurance in Alabama to change my address.  'M'am, the policy holder must request the address change.  He is not well.  It's a federal law that he request the change, she says.  I've been on the policy for thirty years.  Oh well.

[Firewalker50]

That's a very good point CLKD - and thinking ahead.  It reminded me of my grandmother who also stayed at home rather than go into hospital or hospice.

We were advised to get sheepskin covers for the bed.  We are in the UK but I am sure there must be something on line for US.   This is one extract from the Australian site that provides to the US - just as a starting point.......   the link to the website follows, at least for information.

Premium grade Australian Medical Sheepskins (AS4480-1 1998) add comfort and an improved feeling of well-being to those confined to a bed or wheelchair. The 2004 clinical trial at the Royal Melbourne Hospital found that people placed on these Australian Medical Sheepskins had 58% fewer bed sores than those placed on regular bed linen. For clinical trial details, click: Research

http://www.medicalsheepskins.com/

There is also a range on Amazon.com - fleece and synthetic fleece with variety of prices to suit budget.   

I am sure a call to a supplier to explain urgency would get it quickly.

Fx

[Trey]

I have inflatable pillow type things to alternate distribution of weight, but will ask hospice if they offer anything as well. I bought mine so have been using them from the start.  I despise bedsores and will do everything to prevent.  Thanks for the good reminders.

[CLKD]

"Federal Law" makes a difference to our "Data Protection Policy" which means that only the Policy holder can talk to Insurance or utility people 

[Horsie]

Trey,

Your courage astounds me. I am thinking of you both. Best Wishes x

[Skylark]

I'm so sorry to learn that you just don't seem to be getting the same back-up there as we do in the UK.  I feel so frustrated on your behalf, especially as you don't seem to have any family help either.  I can't believe you get so little physical help.  How I wish I could just jump on a plane and come and give you some practical help, even if it's just taking over the admin - seems like there are 'job's-worths' and crazy rules all over the world! 

This is going to be an incredibly 'fluid' time for you both, Trey.  The practical and emotional goalposts will change daily, as you've already said, and I hope you are doing only what is absolutely necessary so as not to exhaust yourself.  You're resilience is inspiring.

[Bette]

Mum has been using those inflatable cushions - a small one on her chair and a large one on the bed and they seem to have worked.
Here, for everyone else, is the song Trey mentioned (Chasing Cars by Snow Patrol):-
http://www.youtube.com/watch?v=E1W5lFW-vUY
Maybe you'd like to listen to it, think of them (as I did the minute I heard it) and send all your positive thoughts.
Bette x

[Trey]

Yea team, oxygen and air mattress coming!  Good nursing assistant this am. I had done half of his care so she was thrilled to do a good hair wash and I got to walk the dogs.  The dog walk is the time I have to myself each day.

The nurse does not think he will last a month.  After this morning I found myself hoping that is true as this is stealing all the essence of Don little by little.

Funny a fellow geologist seemed to equate his upcoming partial knee replacement with Don and another geologist, who is near death, and this morning Don said, 'Does -_______ think he's joined the brotherhood with a partial knee?'. He processes overnight it seems.

Skylark, I value all your comments, so if it doesn't hurt you please share anything you wish.  This d___ thing sure moves fast.

Thanks to others on handy hints or I wouldn't have gotten air mattress.  I will use his oxygen now and then.  When we'd go to the Colorado Rocky Mountains, I'd have a portable tank of oxygen.

[Bette]

Sounds like a better day, Trey, I am so pleased.  Mum loves her air mattress - sleeps well on it and no problems with bed sores, even though she was starting to develop one before they gave her the mattress.
Let's hope that nursing assistant comes again - ask for her if you can!
Bette x

[honeybun]

Just wanted to send you a

 


Thinking of you both.

Honeyb
x

[ariadne]

Chasing Cars .... I've always loved that song but listening to it just now put a whole new meaning to the words. It was very thoughtful of someone to send it to you and I'm glad it was of comfort.

ariadne xx

[campion]

I adore the Snow Patrol song - it always moves me.

Thinking of you Trey and Don x

[CazzaT]

Thinking of you both Trey and Don

 

Cazza    xx