Advocating for a loved one

[okarol]

I was asked to write a little essay about "Advocating for a Loved One" and it got me thinking about what that means. I could use some help.
Oooops we just had a small earthquake. Now that threw off my thought pattern! I have an adrenalin rush! it's closer to Kitkatz than me.

Anyway, I was thinking that advocating meant giving the patient support, accompanying the patient to appointments or dialysis, helping with the renal diet, picking up meds, and helping to find resources to assist the patient. But it can be more than that.

- A family advocate could promote the patients best interests regarding living donation and assist them in obtaining and understanding information regarding the evaluation process.

- Advocacy can mean helping to shape public policy on behalf of kidney disease patients by contacting the government to further legislation that can improve the care and quality of life of kidney disease patients.

- Advocacy is participating in public awareness events, helping to educate the general public about the importance of donation.

- Individuals or groups advocate by writing letters to scriptwriters, producers and network executives about inaccuracies and offer praise for accuracy in television and movies related to kidney disease, dialysis and transplantation.

- Advocacy can mean reading blogs and joining discussion forums which are excellent vehicles for sharing experiences and learning about what patients and caregivers are feeling.

- An advocate can contact their local newspaper or TV News and suggest topics for kidney and dialysis related stories.

- Most importantly, encouraging kidney patients to advocate for themselves will help them get optimal care.

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Ok those are the random thoughts I have come up with. I would love to hear from anyone who has suggestions or any ideas. Thanks.

[TiffanyJean]

Karol,

You have probably already writtend this essay, but I thought I would share an experience that Richie and I had a few months ago after he had his parathyroidectomy.

It was his second trip to the hospital, about 2 weeks after he was discharged from his initial stay Richie had a grand mal seizure (the tonic kind) after I called 911, and the ambulance trip to the nearest ER and then  being transfered to our regular hospital and then finally being admitted. To start Richie was put into a room with a neighbor (his first hospital stay they had placed him in a private room ) As soon as we were placed into this shared room we made the request that he needed to be in a private room. By day two it became even more necessary that Richie needed to be in a private room; his neighbor was an older man, that was from another island and had no family here on Oahu. This poor guy would call the nurses so often that they wouldn't come right away (they were great for us but we are pretty low maintenance); the worst part was he had bowel issues. Richie does PD so the nurse would come in and we would all mask, and shut the door and pull the curtain closed. Almost everytime we would be in the middle of hooking Richie up, or unhooking him; his neighbor would call the nurses, so the door would be opened and then in comes a nurse that doesn't have a mask on (plus the neighbor wasn't masked). At times the neighbor would go in his bed, or would be sitting on the toilet chair thing for hours; sometimes they would have to clean things up in the middle of Richie's PD. We had to deal with this for about 3 days, I was constantly asking when we would get moved and constantly getting told that as soon as a room became available that wasn't needed for someone in more serious condition. Richie's doctors put in requests, and still nothing. Finally on day 4 I pulled out the lawsuit card, and very nicely told the nurse that she needed to tell her supervisor that we needed to be placed in a private room by the end of day, because God forbid he get an infection, but we could always have our lawyer give her a call. Thankfully we were in our clean private room by the end of the day.

His neighbor really taught me that having your family there for you while in the hospital, really ensures that you get the best care possible. There are so many ways that a person can advocate for a loved one, and all of them are important. Patients and family members both need to stand up for what they know is right, and not be afriad to be a little b!tchy once in a while.

Tiffany Jean

[okarol]

Thanks - I agree - hospital stays are much better when the family can be there to help!

[MandaMe1986]

I think that one of the main things about Advocating for a loved one is knowing  your boundaries as well. You have to know how much your loved one can handle and when to draw the line. All of these are great but remember you can always go to far.

[David13]

TiffanyJean, I am glad to hear that you stood your ground and finally got your loved one the care he needed.  Unfortunately, I have had to do something very similar for a friend of mine who was hospitalized.  It is so frustrating when you have to "pull the lawyer card" or otherwise let them know you mean business simply to get your loved one the care they deserve. 

Patients deserve to receive proper care, and it shouldn't matter if someone is there watching out for them.  However, it is situations such as these that demonstrate just how important it can be to have a loved one advocating for you when you are ill.

[willowtreewren]

In advocating for my father, I know that he doesn't always remember things correctly. The attending ER Dr. will ask him questions and my dad will answer incorrectly (he doesn't listen to what is being told to him, so that doesn't help).

Patients in pain may also have impaired communication skills.

I think it is really just good business to have an informed advocate for many things.

Aleta

[willieandwinnie]

  I have been Len's advocate since 2001. He was in an induced coma for 45 days and he didn't know where he was or what had happened to him. The 2 hospitals we were in I'm sure were glad to see me leave. I thought nothing of getting in anyone's face when they messed with Len. I sleep on a cot in front of the door when he finally got out of ICU so nurses and doctors would have to crawl over me to get to him. I have doctors that want me to be their advocate. Everyone should have at least one, two to be on the safe side. 

[TiffanyJean]

Being an informed advocate is SO important! When Richie had his seizure it was at 11:00pm so we were in the ER for the whole night; I have been smart enough to keep a prescription list updated in my iPhone, as well as an email with all the major dates (surgeries etc.) over the last year. This came in very handy at 7am when he was finally admitted, and I had been awake the whole night. All the nurses were very grateful for it as well.

In advocating for my father, I know that he doesn't always remember things correctly. The attending ER Dr. will ask him questions and my dad will answer incorrectly (he doesn't listen to what is being told to him, so that doesn't help).

Patients in pain may also have impaired communication skills.

I think it is really just good business to have an informed advocate for many things.

Aleta

Aleta, my mom has had the same problem with my grandpa. For the three years after my grandma died he would drink himself almost to death, and then end up in the hospital; where they would then try and ask him questions. So ridiculous. When my mom would try and get them to talk to her, they would just say 'well he is not unconscious, so we can't talk to you unless he gives us permission.' Well of course he gave permission, and told them that had power of attorney. Anyways it has always worked out in the end. Having an informed advocate just makes things so much easier!

Tiffany Jean   

[willowtreewren]

W&W, you can be my advocate anytime!

Tiffany, my dad sounds alot like your grandfather. About 2 times a year he drinks himself into the hospital. 

I live closer to him than my brother does, so I have spent many nights at ER. Sigh.
Aleta

[TiffanyJean]

Alteta,

That's the same deal with my mom, but luckily this last year was the first year he has been behaved and not taken his yearly "vacation" to dry out. So there is hope! Of course my mom had to finally tell him that if he did it again, then he would be on his own; and that if grandma saw him doing this to himself and to my mom she would be really ticked off! Basically my mom had to advocate to her self in a way....

I think that one of the main things about Advocating for a loved one is knowing  your boundaries as well. You have to know how much your loved one can handle and when to draw the line. All of these are great but remember you can always go to far.

This is very true, when Richie was doing HD, one of the gals (Jen) that we got to know well, her mom was so frail she looked like she would break just moving from her chair to the dialysis chair. Anyways this one night as we were all finishing up, one of the nurses who was filling in from another clinic took her mom off too fast, while she was moving the car around. The stupid nurse had her mom standing (I had never EVER seen her stand) I tried to tell her that she doesn't usually stand and the nurse just ignored me - so I went and grabbed her daughter. When Jen and I got back in her poor mom was getting scolded from the nurse for not staying standing while she took her final blood pressure. Jen flew off the handle - and we never saw the nurse again. Knowing when too much and voicing that is so important.

[greco02]

Now with HIPAA in place the doctors are permitted to speak with the family who are waiting with the patient.  I strongly advise EVERYONE to keep a copy of their own PHR (personal health record).  Try this web site for guidelines on what is important to have on hand in an emergency www.myPHR.com.    They have forms you download (you don't put your info on their web site).  There are many many PHR sites available now, just be sure to do your homework before you decide to enter your personal info onto a site.    Even if you don't take any medications or have any allergies....this is important info for a doctor to have in an emergency. 

[willowtreewren]

What a great idea, Greco! Thanks for the link.
Aleta

[Yvonne]

   Greco02 Do you know of an UK site with those forms, only the site I went to directed by you is not for UK. I would  love to have an English site for this, what a good idea. Without realizing it I have been advocating for John for the past 2 years, and I'm always being asked by the Dr. this and that about him as he can't be bothered with his illness. I'm the one telling him what he can't eat and drink, making the next renal appointment sometimes it gets me down as it can turn into a big argument.  Now if I had this form to take around with me it would help so much.

[willowtreewren]

Yvonne,
On the site that Greco provided there is a link for downloading the forms.

http://www.myphr.com/your_record/free_forms.asp

Even in the UK you could use the forms to maintain John's health records. I hope this helps.
It must be hard to advoacte when John is less willing to be a part of the process.

Best wishes,
Aleta