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