Update On Mom's Progress

Hello Everyone,

It's been a minute since I have shared with everyone how things are going with mom. One month ago Friday she moved from Rehab into an Adult Family Care Home. For those of you who do not know what that is let me explain.

An Adult Family Care Home also called by some an Adult Foster Care Home ( AFCH ) is a small assisted living that is as the name says, in a home. Many AFCHs are set up where the family lives in the home and are the primary caregivers, along with one or two staff they may hire. The smaller ones like the one mom is in are 1-6 residents. There are also 7-12 resident homes and 13-20. Once you reach 21 or more they fall into a different classification by the states. If they family does not live in the residence then the home's owner will hire staff to cover the 24 hour shifts. I have seen homes that are run both ways and must say most are equally nice. 

The Plague of Dementia Hit Robin Williams Too - What is Lewy Body Dementia ?

An underlying brain disease may have been the cause of his depression.

 

This past Tuesday morning as I always do, I sat enjoying my coffee watching the morning news when an interview took by breath away. The interview was with Susan Williams, the wife of the amazing actor and comedian Robin Williams. I sat silent, tears in my eyes as she spoke for the first time about the death of her husband. The heart wrenching interview struck quite a nerve for this caregiver when she revealed that Robin's autopsy showed he was suffering from Lewy Body Dementia or LBD for short. As a caregiver I have seen many people suffering from dementia - to many! LBD is the second most common form of dementia next to Alzheimer's. It is estimated that 1 million Americans suffer from LBD. 

Susan spoke about Robin's sudden rash of symptoms that started popping up about a year prior to his death. She said he complained about things like severe pain in his gut, sleeplessness and constipation. She even thought he might be a hypochondriac. But then he was diagnosed with  Parkinson's disease in May 2014.

Changes to This Website Soon !

Hello and welcome to all. Will Branning here.

Great News for Everyone!

Ruth Anne and I are planning some great new changes for this blog and website to begin in the next week or so. All having much to do with the PAL Caregiver community, one which is rapidly growing, and allowing this location on the internet to become a valuable resource for us all.

In addition to Ruth Anne's blog posts we will be adding sections on:

• Obtaining training to  become a Professional Caregiver.
• Forums for Family and Professional caregivers to exchange ideas and issues.
• News sections relating to Caregiving, Caregiving law issues, Medicaid - Medicare news and changes in Caregiving for our family and clients.
• And much more...
• Ideas and suggestions as always are appreciated.

We are excited about these great new additions to PAL Caregivers and hope you will be too. Please check back often to see what's new.

Best Regards,
Will Branning

Moving Mom Into An Adult Foster Care Home For the Aged

Hello Everyone,

After another fall and a return to rehab for several weeks my sister and I have finally taken the steps to move mom to and Adult Foster Care Home ( also called Homes for the Aged ) on a full time basis. This was one of the hardest,  heartwrenching decision we have ever had to make, but it was best for all.

AFC - a house like you or I would live in, only with some modifications inside to accommodate the residents.

My mom as you may know from my previous posts has lived with either myself or my sister since 2001 when dad passed away. She is now almost 92 and has started to develop dementia. My sister and I are not getting any younger and the increased care my mother required was making it very difficult. She could no longer be left alone even for a few hours to go shopping so we had to have someone with her around the clock and night time care literally meant no sleep for my sister, who has and needs to keep her daytime job as her husband was laid off after 27 years, leaving them with one income.

We therefore decided it was time. Time to make things better for all involved, especially mom. We searched and searched and finally found a wonderful Adult Foster Care Home only 10 minutes from both of us.

Update On Mom: Rehab Again

Hello Everyone,

As of yesterday mom is now in rehab again. Two weeks ago this Saturday she was sitting on the side of her bed and apparently ( no one was in the room at the time ) dozed off for a moment and she went down on the floor landing on her knees. At the time my brother who lives out of state was in for a visit. The entire day was spent with the 4 of us in the ER with mom. As the hours passed and the tests came in we were encouraged when told that she did not break anything, which is remarkable because the doctors have told us for many years that mom's bones are so thin from osteoporosis that fractures come easy to someone like her. In fact she fractured her toe just bumping it against the shower edge. Thankfully this time no breaks, however her knee did have a huge split in it and required 12 stitches. I think maybe because she was suffering from edema at the time that perhaps the extra water protected her? ( just a guess )

Hello Everyone Just Checking In With All

Hello Everyone,

It's been a busy few weeks. I am waiting to hear from my surgeon on my possible surgery. I hope to hear from him soon. I have also been dealing with some dental issues and I hate the dentist. The older I get the more I hate going as my teeth are so sensitive these days, ouch!

Mom is doing ok right now, except for some reason she seems to be having more problems with dementia symptoms, checking and rechecking things, asking over and over again the same questions. My sister and I are both stunned that she is developing these symptoms so late in life, she is now 91.5. Up until last year mom was sharp as ever, knew what was where, how much money she had here and there always laughing and joking with everyone. Then for no apparent reason she started having trouble with her memory and I guess we just thought that would never happen to her. Just goes to show it can happen at anytime to anyone. The mind is a mystery and I fear it always will be.

Anyway I just wanted to check in with my readers and let them know I have some great posts coming up. I have been doing some research on several subjects that I think you will find interesting. Including a post coming up where I will share an interview I did with mom on what it's like to be old. She revealed some interesting things to me and gave me permission to share them with you. I hope to have that post up in the next day or two.

Until Next Time

Take Care All

Ruth Anne

Should Parents Pay Their Children For Care?

Do you have loved ones you are caring for? How about grand children? If you are here reading this blog, chances are you are a caregiver.

It's been a few days since I have posted and I am sorry for the delay. I have been caught up in my caregiving duties as well as enjoying time with my precious 16 month old grand daughter, she is such a delight and a welcome refreshment to help make it through the tough times!

Do you visit and post in the online forums such as caring.com or agingcare.com? I have also been doing a lot of reading and posting on these forums lately and find there are so many wonderful people out there doing what we do, caring for a loved one with all that entails and just trying to put one foot in front of the other on the journey we travel.

One subject that has been coming up quite a bit in the forums lately is the debate on whether or not it is proper to ask your parents to pay you to act as their caregiver, provide housing and the like. And the opinions run the gamut. So I thought I would share some of my thoughts as well as how the government feels about the subject.

Consider: What type of care are you providing? What have you had to give up to provide this care? And how do your parents feel about the services you provide?

Many of you have given up so much to care for your parents and do so willingly, out of love. When your parents need intense care or supervision as my mom now needs, you may have moved them into your home in order to provide that care. Many of you have also had to give up outside employment to stay home 24/7. 

Some feel that no matter what you have to give up, you should never charge your parents for care, after all they raised you and provided for you for many years. If that is your opinion and you have the financial resources to do so that is fine and I applaud you for your devotion and love. Some however do not have the financial resources to not work. So when their parents need care they have a few options. They can hire a caregiver, put their parent in an assisted living or nursing home or they can work for their parents and provide the needed care. If given the options most parents would likely prefer to have their own family caring for them for as long as that is possible.

Consider what it would cost to put a parent in an assisted living facility. If they need anything other than basic assistance such as meals and general supervision the costs can be $5 to $6 thousand dollars a month. If they need to go to a nursing home the costs can skyrocket to $8 thousand and above. If you were to hire an in home caregiver the cost would be anywhere from $20 to $30 dollars an hour depending on how much care is need and what area of the country you live in. These costs can eat up even a healthy retirement account in no time. 

If you are the one providing the care, you may as many people feel, it is only reasonable that you get paid. How much is something you and your parent can work out, which in my experience is very reasonable and so much less than what they would have to pay for outside care. No one should take advantage of their parents and charge them outrageous amounts of money just because they feel they can, this is a form of elder abuse. However no one should question a reasonable amount. 

Caring for a parent who is aging is a very tough sometimes full time job. If you have siblings who do not participate in the care they may question you getting paid. In that case you need to make them understand just how much you have given up and how much you do for mom or dad or both. If they are worried about their inheritance, remind them of how fast that will disappear if mom goes to a nursing home.

And the government too feels it reasonable for a family member to be paid for services. Many do not know that Veterans Benefits can be used to pay family members. In most states a medicaid waiver can be uses to pay family caregivers. The government is beginning to realize something that has been obvious for years, and that is, that keeping the elderly at home with family is much more cost effective. They are finally starting to get it. 

So if you are caring for mom or dad, grandma or grandpa and you need to be paid, in this person's opinion that is fine. You are working hard, maybe harder than you ever have before. You are also making a better life for your family member, because they are being cared for by someone they know and love. You are doing a good thing. Don't feel guilty!

One important note for paid family caregivers - please have a caregiver contract in place. This is especially important if you are using government benefits to pay your wages. Also this will protect you if in the future your loved one has to go on medicaid and the money to pay you was used during the 5 year look back period.  (The Deficit Reduction Act of 2005 expanded the look back period from 3 years to 5 years.  Almost every state has adopted this or is in the process of adopting this rule).  If you do not have a contract the government may look at those payments as gifts and require them to be paid back. The contract will save you in that case. Another good reason to have a care contract in place is if there are any disputes between family members regarding inheritance, we all know how nasty greedy relatives can be. For information on how to structure a care agreement you may want to check out this link click here . 

Dear Ruth Anne, Here's what I think...

I hope this information helps those of you who are wrestling with this subject. And I would love your feedback. How do you feel about it? What side do you come down on? Please share your thoughts. 

Until Next Time
Take Care
Ruth Anne






 

Handling Abuse From The Elderly You Are Caring For

Hello Everyone, hope all are well today. I wanted to explore the topic that seems to be a common thread for many family caregivers. In the support groups I attend online and in talking to many of my friends who care for a family member as well as observing what my own family is going through, I have found that it is very common for the main family caregiver to experience abuse from the elderly person they are caring for.  I am trying to understand this anomaly if you will where those who do the most for their parent, partner etc seem to get the nasty end of the personality thrust upon them. I do know that when a person is suffering from dementia of some form, aggressive, even nasty behavior is common. However I have observed that many, many elderly ones who do not have any form of dementia still exhibit this abusive behavior mainly towards the family members doing the lions share of the care.

My mother is a good example of this. She has never been a nasty person, everyone loves her. She is funny and usually lighthearted. She has had macular degeneration for over 25 years and is mostly blind but through it all she kept her upbeat personality.  She lived with me for 9.5 years as many of you know from reading my past posts, and now lives with my sister and her husband. So now is were it gets strange. She has become nasty, mean and manipulative with my sister and her husband. To the point that my sister can hardly take it anymore. She seems to want to push my sisters buttons all the time and yet when I care for her two sometimes three days a week, she is totally different. She is happy, pleasant and kind. So why the harsh treatment of the people doing all the heavy lifting? The people who allow her to live in their home and even made all the modifications to make it safe for her. The people who run out to the store or restaurant to get her the food she wants on any given day? WHY???

I have my suspicions about why this happens and have been reading on some of the support sites and they seem to confirm what I thought. When people get old and lose their independence, when it becomes hard to even get up in the morning and stay dry through the day, they get angry, angry at getting old. But how do you get angry and lash out at something abstract? You can't, so you do the next best thing you lash out at the ones closest to you and the ones you feel safe with, those you feel won't abandon you for doing so. Does this make sense? Well not really but what about getting old does. We don't know exactly what they are going through, we haven't been there yet. We see it, but that is very different than experiencing it!

This may explain some of the behavior, but that in no way excuses it. No one should have to suffer abuse at the hands or mouths of another, NO ONE. So how do we defuse it? There are a few things that we can do to help the situation: 

1. If the person is in their right mind, no dementia issues, we must have a conversation with them. Tell them how they are behaving and how that behavior is effecting us. After all if someone close to us was offended by our actions we would hope they would tell us right?
2. If the person does not respond and the behavior continues, we need to take action, walk away when the abuse starts, take a day off from visiting, refuse to listen. They will soon get the message, even those with mild dementia can pick up on our actions and realize that we mean business.
3. If the abuse continues despite all efforts, we may need to make a change in living arrangements, or care arrangements to remove ourselves from the situation if possible. We cannot allow our health to be destroyed at the hands of another, no matter who that person is.

I would really like to hear from you. How have you handled this situation. What has and hasn't worked for you. Do you see this as a real problem facing caregivers. Help us help each other by sharing your thoughts. 

Until Next Time
Take Care
Ruth Anne

Do You Know About the Treatment for Edema In Legs ?

Today I want to share with all of you a treatment we just started using for my mother's edema*.

Until about 6 months ago my mom's legs were fine, no hint of edema at all. Then after her last hospitalization she started having problems. The pitting edema** would go up and down until it finally would not respond to the actions my sister and I were employing at all, such as elevating the legs. We even got her a hospital bed to help. We also used compression stockings, which my mother hates as do many people who have to wear them.  Then one day at a routine foot doctor appointment the nurse asked if we had a 'bio compression system' for her. I had never heard of it. The doctor who explained a little about how it worked, said 'Medicare pays for it and would we like to try it?'. So I thought why not, anything to get the edema in her legs down.

About 3 days later the rep from the Bio Compression Systems company came by and set us up. The system is very easy to use. It consists of a small compressor, and two ( what I call Moon Boots) sleeves that fit over each of the legs and zip up on the front of each boot. They each have a hose attached that you plug into the compressor. Once they are on you turn the compressor on and the boots begin to inflate in sections, starting at the bottom moving up to the top. The idea is that as they inflate in this gradual progression they push the water up the leg, and increase circulation at the same time. 

I must say we have seen an improvement. Mom is suppose to wear them for one (1) hour twice a day. Again the name of the company is Bio Compression Systems out of New Jersey. Their phone is 800-888-0908. They may be able to recommend a doctor in your area who can write a script for this. It has to be used under doctor supervision and not everyone is able to use this, but it may help some as it has my mother.

Until Next Time

Take Care

Ruth A

"Love me my Moon Boots!"

* Edema: A condition characterized by an excess of watery fluid collecting in the cavities or tissues of the body.

** Pitting edema: Observable swelling of body tissues due to fluid accumulation that may be demonstrated by applying pressure to the swollen area (such as by depressing the skin with a finger).

Wikipedia link describing "Pitting edema" with photos - Will

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