New Study says Family Caregivers are undervalued

I doubt if there are any family caregivers or recipients out there that will be surprised by the findings of a new study done by AARP's Public Policy Institute that found that, were family caregivers in just Connecticut had been paid for their work as caregivers for 2009, they would have made around... $8,150 each.

Now mind you, that is 711,000 unpaid caregivers in JUST Connecticut that are providing care to a parent, family member or friend. Nationwide the report determined that family caregivers providing care to their loved ones in 2009 lost an estimated $450 billion dollars in income.

In 2009 the estimated value per hour for care was calculated by AARP to be $11.16 an hour. This is what a stranger would have been paid to provide the same services for one hour. I know that when I took care of my father, I would have accepted $5 an hour for the hours that I provided caregiver assistance to him - but as his daughter, it was assumed by every agency and medical provider I spoke to that I would just provide care to him for no compensation - despite the fact that they would have paid a stranger to care for him. Something that both him and my mother did not want.

Thankfully, my father was a 21 year veteran of the Army and had attained full Social Security benefits by the time he retired, so by the time him and my mom required care they owned their own house where I was able to live with them, supplementing their income through my work as a freelance writer.

Not all family caregivers have the same situation I had, far too many are attempting to care for a loved one, often one that has significant special needs, who has little or no disability or Social Security benefits, on what income the care provider can manage to make in their part time. On that small income they are attempting to provide for their family, pay a mortgage or rent, and still keep the bills paid. It is an impossible task that leaves people that had thought they had saved for their future slipping slowly toward debt.

In an article at ctpost.com, Brenda Kelley, the State director of AARP Connecticut, is quoted as saying:

"If the caregivers in this country fell apart, then our long-term care system would fall apart -- because, that is our long-term care system,"

And yet,companies such as Johnson & Johnson focus their kudos on those in the nursing career. After having been a family caregiver, I consider the unpaid caregivers to be the real heroes of the care system.

Have you heard about the $10,000 Caregiver of the Year Award?

I was looking at Caregiver related headlines and spied this brow lifting bit...

Caregiver Of The Year Award Seeks Entries For $10,000 Award

It seems that the Homewatch CareGivers and the National Family Caregiver Association (NFCA) have cosponsored the National Family Caregiver of the Year Award to help honor the sacrifices that caregivers make in caring for their loved ones.

Find out more about the Family Caregiver Award in this article. People have until July 29, 2011 to nominate caregivers and the caregiver needs to have provided care for the individual within the 12 Months preceding July 29, 2011.

How to create a caregiver book

When I was taking care of my dad there came a point where one of my sisters was to take care of him for a few weeks until my mom and I drove a car out the Al-Can to pick up my dad at my sister's place and go for a trip with him in the Lower 48.

Before my sister took my dad, I created a small booklet on the computer that she could take and read so that she was up to speed on what she needed to know about his dietary restrictions and his medications and what to expect from him as she took care of him for a few weeks.

The care only lasted almost a week, but the creation of the caregiver booklet is something that I think any caregiver should consider for when they have someone else taking care of a loved one.

Basically it was a letter from me explaining what the booklet was for.
A page on what my dad liked to eat for snacks.
Information on what he could not eat because of medications or other dietary restrictions.
Some information that was specific to taking care of him, such as how he preferred to be assisted when he transferred from bed to wheelchair and similar things.
A list of what he enjoyed watching on television, and what radio show he liked to listen to as he went to bed at night - with a note that he slept better if he had a nightlight and the radio was left on overnight rather than turned off.

I also included information on his contact information for his primary physician and a basic health history that covered things that might be asked by a hospital, just in case.
A list of what dad's medications were along with information on dosage and what each medication was for.
With that was a standing order from his doctor for a lab test on a few medications that needed their levels monitored by a lab.

Add in a timeline of what can be expected for a few days worth of average care and my sister was armed with everything I could think of that she might need while taking care of our dad.

Even if someone is not taking care of your loved one, I would suggest making up a small booklet that can be kept in an easy to find place so that if something does happen and you need to spend a little time in the hospital or have to go somewhere and leave someone else providing the care you normally provide, you don't have to spend precious time explaining things. The stand-in caregiver can be left a handbook specific to your loved one.

No matter how bad it seems. You are not in this alone

There are times when family can just drive you completely insane. I'm talking about those times such as when something trivial causes a rift within a family, or a misunderstanding will start an argument that spirals out of control. These are universal things that every family has to deal with, but when they impact the care of a loved one it is particularly difficult to take.

A search of Google quickly brings up a large number of results that concern family stress and caregivers. A couple of examples of common issues in these articles are old arguments that crop back up - even from childhood rivalries or issues that arise from the division of tasks in caring for a relative. There might be different points of view on what is best for the care recipient, where the children of an elderly woman might be divided in their feelings about providing care at home vs placement of her in a retirement home - even if it is against her will.

These are only a very few of the things that can cause strife in a family, and the main thing I want to convey here is - whatever is happening, however hard it seems to be, chances are, somewhere out here, there is another caregiver that has, is or will face the same kind of issues that you are facing at the moment. My only advice... grab a diary and pour your heart out into it. Or hop on the phone or a chat program and pour your heart out to your closest friends. If you need someone that can talk to you and understand the issues you are facing from a similar perspective then you might look around online for caregiver forums or support groups. Shared stories can go a long way toward shared healing.

Exercise Possibilities

I have got to thinking about things that my dad and I could do together, and I realized that I was missing out on something that we have the ability to do now that we have finally got dependable transportation.

We are going to start driving as far as the local paved bike trails and then hike along them with him in his wheelchair and me walking. We can take the dogs along with us for moose protection (or is that moose fodder?), and hike for so long, then back to the car. A fifteen minute walk in one direction would be a total of a 30 minute walk for me, occasionally pushing the wheelchair uphill at slight inclines, so the thing will add to the workout I get.

And we can start training Bear to be a chair pulling dog, so he can assist me with the hills. Maybe teach him and Shy to pull the chair together, but she's still interested more in grabbing him by the scruff of the neck and coaxing him to wrestle, so that might not be a good idea.

Sometimes you just have to sit and cry

One of the problems a family caregiver faces is lack of sleep due to an unexplainably angry care recipient. I know why he gets angry, it has to be so frustrating for him to not be able to do the things he used to do all the time, like read a novel or know how to use a computer, but... he takes it out on me and won't even admit why. Not sure if he knows why. Any little thing I don't do fast enough suddenly becomes a reason to scream at me something along the lines of "you snotty little brat!" - stuff dad *NEVER* would have said before his stroke.

All I can do right now is hide out just out of sight and wait for him to yell about the next irritant (usually me). Wednesday my sister will be taking him in to get a blood test. If I can just hang on until then I'll be able to sleep for at least a couple of hours straight before she brings him back home. I'm likely to snap the head off anyone that tries pinching me for not wearing green on Paddy's day, but I'll be able to destress Wednesday.

Eldercare Abuse in Nursing Homes

By now you should all know that I detest nursing homes. It is not the idea of a nursing home that I dislike so much, I actually adore the idea of seniors having the option to live somewhere where everyone is in their age range and where they have someone looking out for them 24-7-365. Unfortunately in my experience that is not the case in the nursing homes I have had personal interaction with.

It downright sickens me when I read something such as a recent article from Parade Magazine about Protecting the Elderly From Abuse in which the lead example of abuse was a 90-year-old grandmother who, in 2006, was raped by a worker at the nursing home where she lived. As scary as that was, it paled in the shadow of the next sentence: "Similar incidents over the years..."

Say WHAT?!

Now, if that is not enough for you to reconsider trusting your loved one to a nursing home, read a little further into the article and you find that in seven states, 7,000 applicants for eldercare positions had violent criminal records or a substantiated history of abuse. I have no idea just how many applications there were in those states (or even which seven states they looked at), but I can tell you that it scares me to think that 7,000 of those who applied for eldercare positions were the kind who would abuse or injure the very people we entrust to their care.

And there are no laws in place that would force screening for eldercare applicants. They screen those who want to work with children, so why not screen those who are applying for an eldercare position?

Burnout

Have you ever been so stressed out that you just want to scream and hit something? It started really bad last night, I ended up just sitting down on the hearth in front of the fireplace and crying.

It seems like I am just beating my head against a wall. I sit here taking care of my dad, and while I would not dream of doing anything else, I am destroying my own future to do it. I have no hope of ever owning my parents' house, because I can not hope to ever pay off the money that is due when it comes due. And I can not hope to ever be approved for a loan to be let pay it off slowly. In short -- I'm screwed and knowing that all I can do is sit here and stare around not feeling like doing anything. What does any of it matter?

I do what I need to to make sure that my dad is comfortable, and try to hold everything else together as best I can, but... It's just all too much and I feel like I am drowning and don't know how to find the surface.

Today I nearly forgot that it was time to pay the Insurance on the house - came so close to not getting that paid --- which if it is not paid the full amount of the reversed mortgage comes due at once. So that is a bad thing to space out needing to get paid. What is really bad is not that I almost forgot it, but that I even have things organized and laid out so I don't miss bills - I just flat forgot what day it was and that I had to pay bills. Stress had me so unfocused I could not think of something so simple as that there are bills that need paid.

November is National Family Caregiver Month

I wanted to do something to help other family caregivers this month, so I have decided that creating a series of videos to raise awareness about the needs of family caregivers was a good place to start. My fist video is about the Social Security Caregiver Credit Act of 2007 (H.R. 1161) that is currently tied up in the Department of Ways and Means in the subcommittee on Social Security.

Here is the video I put together on that last night - let me know what you think about it.




Note: I'm a child of the 70's, therefore when I think of bills in congress, I think of the song that Schoolhouse Rock used to run on TV all the time. I mean no harm in using the song here, only utmost respect for the lessons that I learned from those cartoons and jingles and the ability they had to teach without seeming to be teaching.

Letters to Mom

I have created a site dedicated to my mother, a place where I can write letters and send them out into the vast world of the Internet. It is a place where I can talk about the things that I normally would have discussed with my mom, where I can send letters out into the ethereal world of the Internet.

I am working on creating a similar setup for others who wish to send similar letters off to the world of the Internet, but it is not quite ready yet - I'm finalizing a site design for it at the moment. Hopefully it will be ready for launch by the end of the weekend.

For now you can find my Letters to Mom site on a subdomain of Family Caregiver Info.

Talking to Alaska's Senator Stevens

The other day Alaska's Senator Stevens did a phone call town meeting deal, where he was talking on the phone with people all over the State. I really wanted to ask him about HR 1161, the Family Caregiver Security Act of 2007, but the call had to be ended before they got the chance to get to me.

Ah well, I just need to write him a nice long letter and explain my position to him about that stuff and explain why it is important to help family caregivers. Even if they only helped the ones that are providing direct full-time in-home care, it opens things up for all caregivers to have some kind of voice for their situations.

I think I'll make up a area over at Family Caregiver Info where statements about being a caregiver can be collected together and senators can be sent to see why the bills mean what they do to family caregivers.

Family Caregiver's Social Network

I have finished the work that I was doing over at Family Caregiver Info, so now the site is starting to become the social network for family caregivers that I had envisioned it being when I had built it. I still have some work that I need to get done, but the forum is up and I am working on the knowledge base for articles that have information of interest to family caregivers. Stop on by and take a look at the site - particularly if you had been there in the past, because a lot has changed and I am hoping that people like the changes.

It's nice they help, but they're making things worse

I'm sure that we are not the only ones that have helpful family members that are less than helpful. The members that will take on doing something such as taking the care recipient for a few hours, but are not exactly helpful in providing care while they have them.

My mom and I have a problem with even though my dad is only supposed to be smoking a set number of cigarettes in a day, whenever he goes out to spend time with one of my siblings and their family - he is let smoke as much as he desires. Today he came back after spending some time with them and had not only smoked all the cigarettes that we had sent with him, but had someone buy him a pack of cigarettes and smoked half of that pack as well.

Me and mom are afraid he is going to end up on oxygen, but can't figure out how to convince them not to let him chain smoke while he's out with them. It's about the only break we get, so we hate to just say "no more" to his going even though they are making things worse in the long run.

I'm just not sure what to do, but I figured I would put it out here so anyone else that has this kind of situation will know they are not alone in the catch 22 situation of needing the help, but frustrated by the lack of care given when the helpers are helping.