How We Lived, Laughed and Loved Through Macular Degeneration

While I was reading  on a caregiver forum a few days ago, I can across a question posed by another forum member about Macular Degeneration. They wanted to know if anyone else had cared for a loved one with the eye disease.  That got me thinking, it may be helpful if I shared our family's story of dealing with the very common yet seldom talked about eye disease.

When you think about all the press and medical science that is aimed at things like dementia, heart disease, Parkinson's and so on you may come to realize that Macular Degeneration gets little attention in comparison, even though it is the # 1 cause of blindness in people over 65. My mother is one of those people and here in part is her story.

When mom was just a few years older than I am now, I remember sitting in a car with her one day while we waited for my dad to get done in the store. It was then for the first time she mentioned to me that she was having trouble seeing. She said " I can see but I can't see". What do you mean mom I asked her. She had trouble explaining to me what she meant but she knew something was wrong. At first we thought maybe  cataracts, so we made an appointment with the eye doctor. 

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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VA Benefits In Less Than 3 Months !

On July 7th my mom received her first deposit for VA benefits for aid and attendance. 

This was less than 3 months after we applied! Now that is quite good considering they told us it could take 9 months to a year before we saw anything. So I thought I would share the way I went about applying for the benefits in hope that it would help anyone beginning the process.

I will try to make this as simple to understand as possible.

Aid and Attendance Benefits can be used to help pay for care in a facility like assisted living, in home caregivers and the like. These benefits can also be used to pay family caregivers. 

Unlike the government website I will make this as simple to understand as possible. I hope it helps.  

It's suggested to hand deliver the claim to your local VA office. Ask to speak to a representative and have them look everything over. They will let you know if anything is missing and they will begin your claim for you.

Open the form search page on the government website. CLICK HERE to open in a new window, or copy and paste this link in your browser - http://www.va.gov/vaforms/

Print out the following forms:

1. Form 21-534ez
2. Form 21-2680 
3. Form 21-22
4. Aid And Attendance Affidavit (see below where to get this form)

Form 21-534ez:  Application For DIC, Death Pension and or Accrued Benefits
This form is the one you will use when applying for Aid and Attendance Benefits. You can apply for the veteran or the surviving spouse of a veteran.

The first few sections are self explanatory. When completing section II you will find the information you need on the veteran's discharge papers. 

Section VII :  Your net worth at this point must be below 60,000 for a surviving spouse and this does not include a home, vehicle, furniture or clothing.

Section VIII : This is the section on your monthly income so have all your income sources handy such as social security, retirement benefits, pensions, public assistance etc... when it asks for social security  they what the full amount before the medicare deduction, this is listed on your social security statement as the gross monthly amount. 

Section IX :  Expected Income. Here is where you list your expected income such as interest and dividends or any income not listed in section VIII

Section X : Here you will need to show that your medical expenses including what you pay for care like paying a caregiver, paying assisted living costs and the like along with your insurance premiums if you have supplemental insurance along with your medicare and the premium you pay for medicare part D prescription drug coverage and the deduction for medicare that comes out of you social security.  Here you want to make sure to show that the amount of money spent each month on medical costs along with care exceeds their monthly income. If it exceeds the monthly income by $1149.00 or more you will be approved for the full amount of benefits which is $1149.00 a month. But don't make things up -  you will need to keep records and prove that you are actually paying out for these services. 


The one for whom the claim is being submitted will have to sign a couple of forms and there is a section for witnesses if the claim is being signed by someone else due to the inability of the claimant.

Form 21-2680:  This form needs to be filled out by a doctor. At the time we applied for my mom she was in rehab and they were very helpful in getting this filled out in just one day for us. The doctor should fill out the full diagnosis including the need for aid and attendance. If your patient is blind or mostly blind like my mother, this diagnosis will almost automatically get approval for benefits - as will dementia and other illnesses that require regular daily aid.

 

Form 21-22:  Appointment of Veterans Service Organization As Claimant's Representative

I recommend this form because I think one of the things that made our claim move so quickly is that I took all the forms to the local VA office and requested help in filing the claim. With this form the VA rep will be able to have access to the claim and can follow up on your behalf. This form also needs to be signed by the claimant, so make sure you put that in the stack of forms for them to sign. 

Aid And Attendance Affidavit form:

CLICK HERE to open a link to a copy of this form, or copy and paste this link in your browser -  http://www.stclaircounty.org/offices/veterans/forms/Attendant%20Affidavit.pdf

It is very important that you have a copy of this form filled out by each of the caregivers that will be paid for care giving. And as you will note the claimant will need to sign these forms also affirming that they are paying these people for care. If you have more than one caregiver being paid you will need a form for each one. ( note: you will be required to issue a 1099 if these are in home caregivers so make sure they know this and they will be required to pay the proper taxes on these wages unless you are taking taxes out of their pay for them. In that case you will issue a W-2 as usual for employees. 

 Now that you have these forms filled out you will also need the following when filing a claim:

• Discharge papers for the Veteran WWII Vets form 53-55 Vets -  after WWII Form DD214
• Marriage certificate if filing for surviving spouse
• Death Certificate if filing for surviving spouse

Well that is it for forms. Now I suggest as stated above to hand deliver the claim to your local VA office. Ask to speak to a rep. and have them look everything over. They will let you know if anything is missing and they will begin your claim for you. If you are missing anything get your reps email address as most missing information can be emailed to them by you, saving you extra trips. 

MAKE COPIES OF EVERYTHING - EVERY FORM - EVERY DOCUMENT - AND STORE THEM IN A FOLDER FOR EASY ACCESS.

Now you wait. If you have not heard from the VA in 60 days call your rep and ask them to check on your claim. 

If you have any questions feel free to ask me and I will answer to the best of my knowledge. I do not claim to be an expert, I just wanted to share what I did with the hope that it may  help others.

Until Next Time 
Take Care
Ruth Anne
 

Great Alternative to A Nursing Home : Adult Foster Homes For The Aged

Have you heard of Adult Foster Care Homes For The Aged ?

Hello Everyone I hope all are doing well today. Yesterday evening in our search for a nice place for mom, my sister and I visited an Adult Foster Home for the elderly (AFC). They are in a different class than regular foster homes and are specifically set up for elder care. These homes are popping up all over the place as the need for elder care is increasing and people dread the thought of a nursing home. I can tell you they are a wonderful choice for many. But as always one must do your homework.

Let me give you an idea of the set up. They are a home, yes a house like you or I would live in, only with some modifications inside to accommodate the residents. But from the outside you could never tell that a regular family did not live there. Many states put them in several categories, the smallest being a 1-6 resident, then they go up to 7-12 etc.

The home we looked at yesterday was beautiful and the people were wonderful. It is run by a young polish couple and they have three kids. They live in the upstairs of the home and the lower level is set up for the residents. What I personally like about these types of homes is the small setting with ease of navigation around a beautiful space that is not to big. This makes it great for those with dementia as they are not inclined to get lost as much as they would in a large residence. The people who run these homes and also live there usually have wonderful food, and we smelled some great polish cooking as they had finished dinner not to long before we arrived. The presence of children and a kitty cat added to the stimulation and interaction of the residents and this is wonderful for the children to grow up in. It is such a loving environment. It was bright and clean and just wonderful. 

If you are looking for a place for a loved one, check out Adult Foster Homes for the Aged. Now they are a bit hard to find. Usually you have to find them from referrals, but if you go to your states website on housing and regulatory affairs - here's the Michigan site http://www.dleg.state.mi.us/brs_afc/sr_afc.asp , you can type in your zip code and search for them. You may also find ones for the mentally ill listed there so you have to click on the name to see what kind of care they provide, some are only mentally ill and disabled others are strictly homes for the aged and those with dementia. On your states website you can also check to see if the home has had any violations and if so what they were. The state should be quite open and specific in sharing the violation and subsequent follow up, along with any actions taken by the state. This is what I mean by doing your homework. But in this case the state can make it very easy. 

My sister and I have now chosen two places we think mom would do well in, the only thing holding us up is making the final decision to move her and it's a tough one. Like my sister said yesterday, 'some days I think I can do this and other days I just don't think I can take it anymore'. I am right there with her. Some days my back is breaking helping mom shower and dress but then I look at her and she gives me that smile and tells me she loves me and I think, 'I can't make her move'.

It can be so hard to make the final decision about moving your loved one. I wish there was someone who would just come in and say "here is what needs to be done now!". But that's not going to happen. The decisions are up to my sister and I and we both love my mom so much, as I know you love those you are caring for. 

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

I suggested to my sister maybe respite care for a month or two the rest of the summer, but that is more expensive and mom's resources are limited, however it may give my sister and here husband the break they need. I have also offered to stay with mom for some long weekends so they can escape for awhile. So we will see. It isn't easy and as always there is the guilt we caregivers feel - the ever present guilt - ugg!

Until Next Time
Take Care
Ruth Anne

Don't Judge A Caregiver If You Have Never Been One

We all know that old saying walk a mile in my shoes. Well if you want to form an opinion about care giving live a day in my life!

It's easy to look from the outside and form opinions about people, we do it all the time. We see a mother who seems a bit short with her kids and are quick to rush to form the opinion she's a bad mother. We see an older child with an elderly parent who seem in a bad mood and we are quick to think she must be an ungreatful daughter. Have you been there, do you really know what its like to care for someone day in and day out. It can be exhausting and like most people when they are tired, their emotions are on edge. Even little things can eat at you when you are over tired. That is why I ask if you have never been a caregiver don't judge me.

My sister and I have been caring for my mother since my father passed away in 2001, yes that's right for the past 14 years we have been watching over her. Since she has sever macular degeneration it was not safe

Your Feedback Would Be Appreciated

Hello to all who have joined us here. The goal of my blog is to help family and professional caregivers in any way I can. Our job is not an easy one and those who have never taken this journey cannot possibly understand what we go through. But we understand we know the hard work, emotional trauma and financial troubles that can make this a rocky road to travel. I hope that if this is your first time here that you will do me a favor and read some of my early posts such as the one from Sept 2013 regarding caregiver grief. After you have taken a look around I would love to hear from you. It is by hearing your feedback that I too hope to grow and gain the support I need to continue my journey, for my mom and my clients. Thank you for stopping by and know my door is always open if you need to talk.

Until Next Time

Take Care

Ruth Anne

Feeling a Bit Better For Sharing

So how are you doing today? It's Sunday and the weekend is almost over. I have enjoyed talking with many of you on caring.com they have some wonderful support group forums on their site. One thing I have found this weekend is that sharing with others has lifted my spirits. It hasn't changed anything regarding my situation, but it has helped raise me out of the funk I was in for several days. That old saying misery loves company rings true. When we are down it helps to know others have experienced the same low points and have been able to rise above. It gives us hope that we too can rise above and go on .

I have found that when you bottle your feelings up and dive into your own pitty party you accomplish nothing. It's like walking along the crowded boardwalk with your headphones on tuning into your own little world ( that drives me crazy) instead why not engage with people smile share a laugh or a cry, your life will be so much richer for it. I know mine is.

Thanks for sharing this weekend you don't know how much it helped.

Until next time

Take Care

Ruth Anne

Caregiver Blues

Hello Everyone,

I have been feeling the blues the past few days and can't seem to shake them. I realized today that maybe this is due to the decisions facing my sister and I regarding my mom's care. As I posted a few days ago, we are looking for a nice facility for my mother. Her care is taking a huge toll and we feel it's time to make a change, but change is not easy. For the past 14 years since my father's passing, my sister and I have been caring for my mother who has sever macular degeneration and is now 91. After living with me for 9.5 years she moved in with my sister and has been with her for the past several years. 

Watching someone you love decline is never easy. If you are a caregiver you know what I mean. It takes a toll physically, mentally and emotionally. I think it is hitting my emotions hard this week. Last Monday I took my mother to the doctors because her toe was swelling up. We thought she may have gout, but as it turns out she fractured her toe somehow, not sure when it happened but since she has osteoporosis and her bones are very brittle, it could have been just a tap when getting in or out of bed or a stub against the wheel of her walker.  At any rate the visit to the doctors was very challenging for her, seeing the doctor, lab work and then x-rays all too much. When we got done she said " this is my last time, I am not coming back here again". The struggle to get there and the struggle to use the bathroom while there, and get the x-ray was just to much for her. 

When we got home she was eating her lunch and she said to me, " taking care of me is getting to be to much for you and your sister" then she caught me off guard and said " it's okay I'm ready, we've had a good run haven't we, I'm ready to go". I didn't know what to say, I was tired from the trip too and I started to cry. Ever since then I have been in a funk. I just don't know if I am coming or going and I have no energy. I think that comment hit me hard. What do you say to your mother when she says she is ready to die, that life has been fun but it is just getting to hard?  No I mean really what do you say? 

My mother has always been there for all of us, no matter what troubles we were having. She always cared, and I want to be there for her. I want to make the right decisions for her, but knowing what the right decisions are is hard. We have found a nice place, near us that I think will suit her well, but making the final decision is tough. And she only has enough money to stay there for two years so if she out lives her money we will have to move her again to a facility that takes medicaid and those facilities are not always so nice. 

So we are at a crossroads and it comes down to the wire. The decision has to be made very soon and I think that is what has me in this funk. Just can't seem to shake it.  Thanks for listening.

Until Next Time
Take Care

Ruth Anne

Facing The Tough Decision To Place Mom In An Assisted Living

As my readers know I am not only a professional caregiver, I am also, along with my sister caring for my 91 yr old mother. Now we are at a crossroads in her care.

The task of caring for her at home is becoming just to much for my sister and I. And so we are searching for the next place to plant our foot on this journey of family cargiving. This is the toughest step we have had to take so far, but for the sake of all of us it is a step I feel we must take. Even if the road is a bit rocky and our footing is a bit unsure we must trudge ever forward.

Today we looked at a facility that is classified as an adult foster home in Michigan. It is the largest of its type, as classified in the state, being a 20 bed facility. In Michigan there are 3 types of adult foster homes licensed by the state, which are also called homes for the aged. They are 6 resident, 7-10resident and 11-20 resident.

The facility was nice with private rooms with private bath, staff seemed nice and she can bring some of her own furniture. And best of all it is close to all of her family and friends and so visiting will be easier. The only draw back is she only has enough money to stay there for 2 yrs which means if she runs out of funds and has to go on Medicaid we will have to move her again in 2 years. 

Monday I will reach out to the Area Agency on Aging ( most every county in the U.S. has one) to see what advise they can offer as we make some very tough and sometimes scary decisions.

My mom is a wonderful person and a great parent, grandparent and great grandparent and we want see to it that she is as happy as possible during her final years. And that is why these decisions are so hard to make.  I will share with all of you the progress we make as we take these next very tenuous steps. The time has come, the time no child looks forward to, when we have to make decisions for our parents that they may not at first like, hopefully mom will understand and know it is for the best. At least I pray she does.

Until next time

Take care my friends and share the story of your journey on this road with us. The old saying goes there is strength in numbers, and we all need strength on this journey.

Ruth Anne

This always reminds me of a verse in scripture which says:

"Very truly I tell you, when you were younger you dressed yourself and went where you wanted; but when you are old you will stretch out your hands, and someone else will dress you and lead you where you do not want to go." -John 21:18, New International Version 

It is a big responsibility.

Will

Families: Why Consider A Professional Independant Caregiver

When the time comes to look for more help to care for your loved one, you as family members have two options:

1. Hire a caregiver through an agency, or.
2. Hire a Professional Independent Caregiver.

Our goal here is to help families see the value in hiring Professional Independent caregivers.

When you chose the later consider the following:

An Independent Caregiver will more times than not have a more vested interest in their business / career. It is their sole source of income for many and it is their business, they want it to succeed. How do they do so? By providing exceptional care for their clients. They depend on referrals  to keep them working. If their performance is poor they will have no referrals to keep them employed.

At PAL Caregivers we are building a resource spot for Independent Professional Caregivers to draw from. We will be providing links for them to help them boost their knowledge and share best practices with each other.

I have worked as an independent caregiver for sometime now and have observed caregivers who work for themselves and those who work through agencies. I believe that with the proper resources, independents are to a great extent the way to go.

Also consider this... When you hire through an agency your hourly rate will be 20-25 an hour with 9-10 going to the caregiver, not a living wage and barely more than a fast food worker. However if you hire an independent, you can pay them 15-16 an hour, feel good about that and at the same time get better care at a lower rate than the agency.

A good place to look for independents is at the website, Care.com. You can place an ad on that website and also see profiles of those you would like to interview.  When I decided to go back into caregiving I looked at the ads on this site and found a wonderful family to work for. When my client passed that family referred me to another family, so for me Care.com was a great resource. I am not sure of the rate to place an ad for help, but I think it is in the 35-40 dollar range and your ad is posted for a good length of time. This site also helps connect people who need nannies and pet sitters. Check it out, you may find that special someone who you've been looking for to care for your loved one.

A Professional Independent Caregiver
A Person You Can Know and Trust

Also consider that when you hire an independent, you have the same person all the time, or perhaps two individuals if extended hours are needed. That way the needs and personalities of both the caregiver and the person receiving care came become familiar. They begin to establish a relationship and that makes it so much easier on both parties. When you hire an agency they may say they will send the same person, however that is just not always true. They may try, however their turn over rate is high because of the low wages they pay so over the course of just a few months you may have dozens of different people in your house, people your loved ones don't know and you don't know.

I do think companies are a valuable resource for backup, vacation time and such so it would be good to establish a relationship with an agency for those needs. But think about an independent for the reasons I mentioned above. Also, on Care.com they have an application that allows you to pay your caregiver through them so taxes are taken out and all the obligations of both you and the caregiver are met.

It's a great way to go. Give it a try.


Until next time take care

Ruth Anne

 Important notice: PAL Caregivers.com - This website and its content is available solely for your information, interest and education. It is not affiliated in any way with any of the goods and service providers listed. We highly recommended that you interview and check references for any providers, goods or services. You should not rely upon this site as the sole basis for any decision or action you may take after reading one of our articles. We do not provide specific endorsements for other goods, sites or services.

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Two Types Of Power Of Attorney We All Need

Sorry for the delay everyone. It's been a busy week, but I wanted to get back to finishing the three major pieces of paperwork everyone should have (that is every adult - not just the elderly).

We talked about the Will and the Advanced Medical Directive in two previous posts. Now we will talk about the Power Of Attorney forms and what they are needed for.

As I said, every adult should have these forms made out signed, then stored in a safe place well before they are needed. If you make them out as a younger adult you can always change them during the course of your life and update them as events change and people in your life change. However the need for these can arise at any age so don't wait until it's to late!

There are two types of Power of Attorney designations you will want to consider. The first was touched on in my post on Advanced Medical Directives. This type you chose for Power of Attorney for Health Care - a PAHC, also referred to as your Patient Advocate. When you chose your PAHC, the person(s) should be the someone most likely to be available should you have a medical emergency and need someone to speak for you. Many times a spouse is chosen and then and alternate such as a child who lives close by, a sister or brother etc. As I mentioned in the post about AMD, it is important that these people have copies of your Advanced Medical Directive and know your wishes as written so they can follow them should the need arise. A particular instance that I can think of would be someone with deeply held religious views on things such as the use of blood. I know Jehovah's Witnesses do not accept blood transfusions, so a person who was to be a Patient Advocate for one of Jehovah's Witnesses would want to understand their religious view and agree to uphold it for them. Choosing your Power of Attorney for Health Care or Patient Advocate should not be a hasty decision, but one that is well thought out and talked out with the person chosen.

The second Power of Attorney is the one we are most familiar with and that is Power Of Attorney for Financial Transactions.This form too can be found on the Internet and printed off and filled out easily. However you must have this one witnessed and notarized for it to be accepted by your financial institutions. Once you complete it do not sign it until you are in front of the notary, as they have to physically witness your signature.

Your Power of Attorney for Financial Transactions designate should be your most trusted associate, for you will be giving them the power to run your finances (usually all of your money and assets) should you be unable to manage your affairs. This person can be given limited (such as bank accounts only) or broader  (such as real estate, stock as well as bank account access) power.

One big misconception is that the Power of Attorney is good and in effect after you die. That is simply not true. This document is valid only while you are alive. Once you die your Will comes into play and the Power of attorney document becomes void.

I hope this information has been helpful. As always if you have any suggestions, comments or concerns we welcome then.

As caregivers we should make sure those we care for have their paperwork in order and that we know where it is. Don't be caught unaware be prepared.

Until Next Time, Take care of yourself!

Ruth Anne

Macular Degeneration and Hallucinations

Hello Everyone, hope all are well. As I mentioned a couple of days ago, today I will share some interesting information on macular degeneration and hallucinations. Although unknown to many of us, people with macular degeneration or other low vision problems often see hallucinations. I became aware of this one day when I took my mother to the eye doctor many years ago.

 
Macular Degeneration. The macula is made up of millions of light-sensing cells that provide sharp, central vision. It is the most sensitive part of the retina, which is located at the back of the eye. When the macula is damaged, the center of your field of view may appear blurry, distorted, or dark.



My mother's macular degeneration started some 28 years ago before there was any real research being done on the affliction. There were no shots to slow the progression as there are today, so she lost most of her sight in just the course of a few years. She was, as she is to this day, almost totally blind, having no central vision at all and only hazy peripheral vision.

One day before her sight was as bad as it is now I took her to a wonderful sight specialist in Grosse Pointe, Michigan. Her name is Lylas G. Mogk, M.D. She is a lovely doctor, very kind who had a father with macular degeneration. She also wrote a very wonderful book on the subject sharing not only medical information about the affliction but she also shared many personal items about how her father coped with losing his sight. As we walked down the hall to the exam room we noticed some drawings on the wall that looked like they had been done by children and we thought how quaint. As it turned out, those drawings were not done by children but in fact by her patients. They were drawings of the hallucinations they had experienced. Several of the drawings were remarkably similar, rows of houses with long stairs or children playing in the yard.

My mom could still see a bit better back then, and when she saw the drawings she said, "those look like the things I see". Until then I did not even know she was having hallucinations. She never talked about it, fearing people would think she was crazy. And that is how many people who have these hallucinations feel. They know the things are not real and if they talk about them maybe someone with think they are losing their mind, so they stay quiet.

There is in fact a real syndrome that people with vision problems relating to hallucinations may suffer from called - Charles Bonnett Syndrome or CBS.

If you would like to read more about this condition,  Charles Bonnett Syndrome, I have included a link to a web page with more information : CLICK HERE

If you are a caregiver and your client or family member says they see things that are not there, don't jump to the conclusion that they are starting down the road to dementia. If they have not had their eyes checked recently, then now may be the time. The things they see may be related to the development of macular degeneration, glaucoma or some other vision loss affliction. The sooner they can receive treatment the better is the hope that they can preserve as much of their vision as possible. I asked my mother yesterday if she still had these hallucinations and she said only very rarely, not like she did before. And the information on CBS does say that most of the time these hallucinations stop occurring or lessen with time.

If you know or care for someone with vision trouble, and they had never said anything about seeing strange things, maybe it's time to ask them in a kindly way. If they have had hallucinations, it could be a wonderful relief to them knowing they are not the only one seeing things that are not there. No one wants to be the only one.

I hope this information has been informative and helpful. The more we as caregivers know about such things, the better we can help those we care for and that in turn leads to less stress. And what caregiver does not want less stress! If you have information or experience with any of the things you read here or want to ask a question, please feel free to do so. We are on this journey together and remember it takes a village....We are your village!

Until Next Time Take Care

Ruth Anne

Helping Our Alzhemier Clients: Do They Experience Hallucinations ?

Today is a rainy cold day and I am off work, so I don't have to be at mom's today. So I thought I would share with you and interesting bit of information I have just learned about Alzheimer's clients.

Most mornings I will listen to NPR (National Public Radio). This week there was a piece on about Alzheimer patients and hallucinations. The report tracked a patient with Early-onset Alzheimer's disease, who is using a tape recorder to journal his experiences as he travels this very scary and unfamiliar road. A road which many of us may one day travel ourselves.

The report was titled - Seeing What Isn't There: Inside Alzheimer's Hallucinations.

Salvador Dali: Persistence Of Memory

What I find interesting as a caregiver is how this piece of information may in some ways help us understand our clients better. One case in point I can think of is showers. If you have the responsibility of showering a client with Alzheimer's you know it can be a very trying experience for both you and your client. My clients physician once told me that they don't see the shower for what it really is, and may perceive it as a threat of some kind. He had a patient who thought he was being asked to get into a boat and he thought the boat was sinking. That of course made him very fearful. Could it be that he was hallucinating at the time? Well maybe so.

There are other times when our clients behavior may seem odd to us, however if they are seeing things that are not there it would explain a  lot about their actions. This is just one more bit of information that we can have in our data banks to help us deal with the day to day issues that we face when caring for an Alzheimer's patient, whether it be a client or family member.

"Up to 50 percent of people who have Alzheimer's disease experience hallucinations, delusions or psychotic symptoms, recent research suggests." - National Public Radio

On a similar note my mother has severe macular degeneration, and it is common for patients with this disorder to see strange things also. I will share some insight on that with you tomorrow. And also I will have some links to information on just what it is they see, because believe it or not, when they tell about their visions - or draw them if they able there is a common thread...... so unusual you wont believe it.

Until tomorrow Take Care

Ruth Anne