When a person is suffering from chronic conditions or terminal illness, long-term skilled daily help with health and personal needs may be in order. Whatever level of care is needed, it can take place in three settings:

**the person's own home

**your home

**an institution

Home Care Considerations:

Whether care will take place in your home or that of the person who needs care, the following factors must be considered:

**There is enough room for both the person and such items as a wheelchair, walker, bedside commode, and patient lift.

**All rooms are on one level.

**A doctor, nurse, or specialist is available to supervise care when needed.

**A hospital emergency unit is close by.

**The home environment is safe and supportive and stimulates independence.

**Money is available to hire additional help.

**The person in question is willing to have a caregiver in the home.

**The caregiver has few other family responsibilities.

Things That Must Be Provided

**medication **shopping **meals **transportation **personal care **companionship **house cleaning **wheelchair ramps, support railings, and alterations to the bath and shower stall

Positive Effects of Home Care

**When a caregiver's spouse is supportive, the experience can strengthen the marriage.

**The relationship between the caregiver and the person in care can grow stronger.

**The savings in health care costs can be significant.

Why Home Care May Not Be Possible

**financial considerations (inadequate health insurance to cover the cost of home nursing)

**family limitations (time, money)

**the caregiver's physical and emotional strength

**the person's condition

**the home's physical layout

**the person's desire to live independent of family

Potential Hazards of Homecare

**You will lack freedom.

**Your duties may have an adverse impact on your job, career, hobbies, and personal life.

**You will have less time for family members, and your marriage may suffer.

**Children in your home will need to be quieter.

**There will be less time for religious services and volunteer work.

**Friends and family may be critical and offer unwelcome advice.

**You will often be awakened during the night.

**You may feel unable to control life's events and may suffer from depression, worry, anger, regrets, guilt, and stress.

**Instead of being grateful, the person in your care may display unpleasant changes in attitude.

**He or she may react to constant daily irritations by lashing out at you.

**You may begin to fear the time when you may be dependent on someone for care.

**You may feel duty-bound to spend personal funds on caregiving.

**You may become physically ill and emotionally drained.


Checklist .... The Ideal Caregiver

The ideal caregiver is----

~emotionally and physically capable of handling the work

~able to share duties and responsibilities with other willing family members

~able to plan solutions and solve problems instead of withdrawing under stress

~able to communicate in a straightforward way

~accustomed to giving and receiving help

~trained for the level of care required

~able to handle unpleasant tasks like changing diapers, bathing, or cleaning bed sores

~in good health, with energy, experience, and flexibility

~able to cope with anger and frustration

~able to afford respite (back-up) care

~able to communicate well with the person receiving care

~able to make this person feel useful and needed

~appreciated by other family members

~able to work with the future needs and preferences of the person in care

~aware of other care options and willing to pursue them

If you have most of these traits, you may be a good candidate to provide home care. However, consider the list of potential "hazards" and be honest with yourself about your ability to cope.

From: The Comfort of Home Meyer/Derr

Every caregiver should read and absorb this. The statistics for AD caregivers dying, getting injured or seriously ill are staggering.

It takes a long time, if ever, for most caregivers to accept AD. It takes even longer for them to accept that they are not superhuman, that they cannot do the work of a professional staff all alone 24/7, plus do all the shopping, cooking, housework, errands, doc appts--and on and on.

Caregivers, please pay attention as if your life depended on it because all too frequently, it does.

I, for one, have chosen care for my mother in my home! I have tried to meet her needs by remodeling our bathroom, and rearranging her bedroom. Her room is prepared and ready for end stage AD.

If you take care of yourself and meet your own personal needs first......and if you and your family are in mutual agreement......you have a workable team (doctor, home nurse, dentist, case manager for medicaid, etc.)that supports your efforts......it can be done!

I am not impressed with our "county" nursing homes or assisted living facilities! Each is under staffed. Also....the homes that are impressive do not accept medicaid! If I were to put my mom in a nh.....I would have to move her out of our county. Therefore, I will keep her home and get the assistance of Hospice when the time comes.

This is a very personal choice and a very important one! No one can tell you what is right for you! Only you know whether or not you are able to serve your loved one the way that they need to be served!

That is quite a list, and will take some time to absorb. I'm taking care of my parents at home, but reading this description of the ideal caregiver, I'm wondering if I am really going to be able to keep doing it.

It does bring up one question which I have been wondering about. I have seen people mention that they "can't afford" to keep their loved one at home, and I have also seen people say that they "can't afford" to place their loved one in a care facility. This list mentions that you need to have enough money to pay for additional help at home. But isn't even more expensive to send the Loved One to a care facility, given that Medicare does not pay for it?

I am confused about this. I suppose the assumption is that the person will go to the care facility on Medicaid, after having run through all their other financial resources?

Can anyone clarify this for me?

ttt

quote:

Originally posted by Redcedar:
That is quite a list, and will take some time to absorb. I'm taking care of my parents at home, but reading this description of the ideal caregiver, I'm wondering if I am really going to be able to keep doing it.

It does bring up one question which I have been wondering about. I have seen people mention that they "can't afford" to keep their loved one at home, and I have also seen people say that they "can't afford" to place their loved one in a care facility. This list mentions that you need to have enough money to pay for additional help at home. But isn't even more expensive to send the Loved One to a care facility, given that Medicare does not pay for it?

I am confused about this. I suppose the assumption is that the person will go to the care facility on Medicaid, after having run through all their other financial resources?

Can anyone clarify this for me?

At least in my state of PA, NHs are paid for by medicare/medicaid but ALFs are private pay. My mom is with me because the amount charged by ALF's would have depleted her money by now ($4,000 to $6,000 per month). Mom's financial resources were limited to begin with and she wasn't ready for a nursing home. To me, a nursing home is only for end stage and I may still dodge that bullet by calling for hospice in the home when the time arrives.

ttt

That's an excellent article with very good and complete lists.

It really helps if the caregiver has the personality type that can be alone for weeks and months and years at a time. A person who just has to be around other people has a tough road.

Also helps to have a very long range - as in years and maybe decades - view of what may be required.

Really helps to be extremely adaptable.

Just a really good article.

I also think this is a good article, but somewhat unrealistic. The descriptions are that of a perfect scenario - perfect caregiver, perfect setting, perfect world.

As a 24/7 caregiver, I do the very best I can with the resources I have available. As each new stage emerges, I try my best to accomodate Mom's needs. She is reasonably happy, very content, clean, fed and loved. She stays busy sorting and rolling coins, folding laundry and doing her puzzle books. She enjoys the family interraction and the time with her grandkids. Our dog and cats are her constant companions. She delights in them.

I think .... no, I know I have done my very best. Despite the AD and the uphill battle. Despite the 100% lack of giving a rat's butt by my brother, our other relatives and Mom and Dad's lifelong friends. I have come full circle with AD caregiving and feel I have a really good handle on it. It was a long process, but I made it.

This is a good thought-provoking list for someone considering AD caretaking in their home, but some things in it are unrealistic. I just don't want to see current caretakers play a blame game with themselves if they don't live up to the all of the lists' expectations.

I agree Betsy.

My mom and dad wanted to live out their lives in the home they built. It is not on one level. We all knew that.

I knew almost nothing about medical stuff but I am teachable and I knew how to read.

It isn't really possible to anticipate everything.

A little stubborn perseverance helps quite a bit, too.

ttt

Wow. I wish I'd had that info available 18 months ago! I knew from the start that we were making the right decision (for our family) in seeking placement for my MIL, but seeing it all in black and white would have been handy to show my SIL (she felt guilty). SIL was still treating her relationship with her mom as parent/child... and not wanting to go against her mother's (the authority figure's) wishes. But there is/was no one around from 9-5 who was willing/able to to provide the care, and it was clearly obvious that MIL would NOT allow an aide to live in or to arrive at the home.

this is some good 411. when people hear that my beloved father has AD they assume he is in or is going into a NH. nothing is easy about AD and you can see it is taking a toll on my mom (primary caregiver) but the plan is to keep him home. HIS home. it CAN be done

I read the list and for the most part I agree with you. If there is money to hire qualified caregivers, and enough family to fill in for the caregiver then keeping a person at home is the best choice, but if the caregiver works and there is little money to pay caregivers, then there is no choice but a facility. I had to place my husband in a NH in order to survive financially, but my friend has her mother at home. There are 8 children that rotate care for her mother, so they were able to take care of her at home. Having every 8th day to care for someone is manageable for a caregiver, because 7 days off and 1 day on is not too difficult, but 7 days a week is very difficult. As you said, it depends on situations. I don't think anyone wants to see a loved one placed in a NH, but sometimes it can't be helped.

maggie.....

Exactly! We, the family and caregivers, need to make the decision what is best for our loved ones! If they are at home and not receiving the care that they deserve, then a nursing home is the answer!

I am the 24/7 caregiver for my mom. Medicaid pays me as her "Relative Foster Home" and then we have my husbands social security check! It doesn't make this a rich life but we survive!

Without outside help, in-home caregivers (during the more challenging stages) do a great big "crash and burn"! We have to remember to take care of ourselves.

We are facing this decision in our family right now. I spent this past weekend in Pgh. with my parents. Mother was put back into the hospital by my sister yesterday afternoon as I drove back home to MD.

Mother has another UTI and her chest exray showed signs of pneumonia. Her potassium levels are up again. If they give her too much diuretic her kidneys start to fail. Around and around it goes. We will not do dialysis.

Mother spent three weeks in a rehab nursing home after her last hospitalization and was actually improving, but as soon as she got home and was under my father's care she has been in steady decline. His doctor has told him he needs a break from mother and has started him on antidepressants, but he will not leave her side for fear she needs something and he is not there. They bicker 24/7.

It is obvious that Dad is not able to deal with the frustrations of aiding an AD patient that does not want help. He has CHF, COPD and diabetes himself, which he manages well and has recently discontinued insulin sucessfully. But he can not deal with mohter and she needs help.

Because of their income level they do not qualify for free aid programs. Next week the Department of Aging will be coming to interview with us and give us a list of available services and pricing that is on a sliding scale of some sort. Mother needs help with personal hygiene, toileting, bathing and dressing, and she needs her meds to be supervised. Generally she manages them pretty well and it's the last thing she still does for herself, it's just that there's so many of them and if there is any interruption during the pillbox filling process, all bets are off.

Other options we are considerig are: Move dad to a single apartment in the same independent living facility, and place mother into assisted living with dementia care. Probably best for them, except Dad will insist on diriving to see mother and we are trying to get him to give it up voluntarily right now. And my sister will then have two facilities to vist while working 6 days a week, rather than just one.

Move them both into assisted iving together in another facility. The one with dementia care won't allow their dog, the one that allows pets is concerned about the level of care mother demands and may not accept her - what happens when she deteriorates?

I am almost ready to file for VA Pension, but they won't qualify unless we move them out of the independant apartment they are happy with finally into an assisted living facility together. As long as their retirement home in Florida remains on the market, it counts as a liquid aset because they no longer live in it - this puts their assets over the VA limits by about 2,000. I am going to file anyways and send in ammended information as their needs increase.

As long as the retirement house is on the market they will continue to live in crushing debt, which no one takes into consideration while looking at income to qualify for assistance. We also continue to pay for lot rent, utilities, etc. Which means there is no money for home health aids, but that is what they need. Looks like I will be pocketing some of the expenses but I'll do what I can for them for as long as I am able.

One step at a time.

inlawg,
I think most of us do look at our parent still as the authority figure. In fact, most books I read absolutely indicate that it is the child who must change because the parent never will. So the parent gets their way their entire life and their children must always subordinate themselves to the parents wishes. That is probably why so many people have problems taking the keys away from their parents who should no longer drive, or who won't place their parent in a care facility because the parent has made them promise never to take them to a nursing home, so the child has to adapt their home to accomodate the parent, or give up their own home to accomodate the parent by moving to the parent's home. Many do this willingly but I do think that it is because they still look at the parent as the boss of the family. The parent always wins. Not winning because they have the disease obviously, but winning because their children always have to give in to them.

I my self have been down the road to nursing homes. I had to put my mother in one 5 years ago, at taht time it was the only one that had a medicare,medicade bed. I try to visit on a regular basis, when I do I cry all the way home (which is a 30 minute drive.) I see her in dirty clothes, she is soiled along with her bed god only nows when they changed her sheets last. I get on the nurses their to bathe her and get her some clean sheets, and they do, but next time I arrive the situation remains the same. I seen brusis on her and they tell me she ran into something (she is in a wheel chair) or was bitten by another resident or hit, slapped,pulled or some story the seam to come up with. I now have my father living with me that also has Alz. So Am I the perfect caregiver keeping him home with me versus a nursing home? What really do you consider perfect? At least he is clean well fed and with a family member that cares about him where nh are undterstaffed and I am sure under paid. But learning to be a caregiver comes one day at a time or perhaps one minute at a time. I intend to keep my father home with me as long as I can. Crying for one parents is easier than crying for two. Perhaps continuing to read some of all of your stories will help me become a better caregiver in the eyes of others. As I know I am doing the best I can with the resources I have. Having some one to talk to has helped me temendously, thanks to all of you for your support.

ttt

ttt

Dear Dawna: You do not have to accept, (nor should you accept), such treatment of your loved one just because this is a Medicaid facility. All of this is very unacceptable.

There are more facilities which accept Medicaid in Reno than just the one you are using. You can choose to make a change. You can also use the Ombudsman's services to assist you with the mistreatment you have identified. It sounds as though there is a possibility or at least a question of neglectful care as well as perhaps an element of abuse? From what you have written, these questions come to mind.

My mother is in a NH which is Medicaid certified, and care is unbelievably excellent, the staff very caring and the place is clean, clean, clean.

No facility and no home is perfect, but there are boundaries that should be in place and should not be breached. Have you spoken to the DON and especially the Administrator? Do NOT feel you must maintain "silence" because your LO receives Medicaid. Not so.

I am so very sorry for your experience and the grief that it brings you.

I think that as much as we try to keep our loved ones at home, there are sometimes situations that arise that finally tip the scales the other way.

While the loved one is able to get around, even in a wheelchair, able to be managed in various ways even though difficult, that is still in the realm of managability.

In my career I have seen families have to change course secondary to the the loved one being bedbound, needing a Hoyer Lift and not having space for one, horrid behavioral issues, overwhelming specialized or complex care due to physical needs as well as it needing to be done across the 24 hour spectrum. And of course the big one, NO ASSETS TO HELP HIRE HELP for the amount of time needed.

As one of my friends told me; "I thought I was really hot stuff. Dad was in a wheelchair, I kept him occupied with TV and minor little "tasks" or things to occupy his time. I could redirect his petulance and managed to get him to eat well. I was super-daughter and kind of arrogant about it.

Then, when it all slid downhill and it was constant 24 hour 7 days per week of HUGE amounts of care, and his constant shouting and needing someone up with him at night every night; I found out I wasn't made of steel after all. It was a horrible realization." She had to place her Dad.

There just wasn't enough money to hire someone for her Dad, and her blood pressure had skyrocketed to the danger point. It was a crisis for her and she was crushed by the thought of placement, but it became reality. As it was, it turned out okay. Her father actually had a bit of improvement in the NH, and she was with him as often as she could and they both benefitted. Not all stories are as successful.

It would be lovely if things could always have a happy ending.

You know what bothers me more than anything? It is the family with the will to care for LO's at home, but they need some help due to either physical needs or they need to work, and there's no assets and no doggoned funding for care at home.

Why in the heck Medicaid pays for NH care and NOT care in the home setting, I still just cannot fathom. This country still does not have the infrastructure in place for proper caregiving, and it is SO not appropriate.

I am always humbled by the dear and excellent people here. All of goodwill, all working to do their best under the significant challenges we all eventually face.

I just so wish we could get Medicaid to pay for help in the home to the degree they shell out the bucks for nursing home placement.

And we're all too darned tired to start a powerful lobbying group. We're not exactly a popular cause.