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How to Care for a Parent With Dementia at Home


Mom and dad did their part in raising you, the day may come when dementia strikes and it will be your turn to play caregiver.

Nearly 10 million adult children over the age of 50 care for aging parents and the percentage of adult children providing personal care and/or financial assistance to a parent has more than tripled over the last 15 years, according to The MetLife Study of Caregiving Costs to Working Caregivers: Double Jeopardy for Baby Boomers caring for Their Parents.

When you decide to bring a parent into your home to help them transition through this stage of life, there are some real upsides. “To many seniors nothing is more important than maintaining their independence and proper home care lets them hang on to that all important sense of independence,” says Emma Dickison, president of Home Helpers, a senior care franchise that provides comprehensive home care services for seniors. “Familiarity with their surroundings – from the home itself to the neighborhood parks, stores and other amenities promotes better mental health and a general sense of well-being,” she adds.

But taking care of a parent with dementia at home is a responsibility that should not be taking lightly, cautions Peter Ross, co-founder of Senior Helpers, a provider of in-home care services for seniors. There are several types of dementia, such as Alzheimer's, several stages of dementia and a senior can have multiple dementias at once. The challenges don't stop there. Many homes have barriers that become increasingly relevant with age. For example, steps can be a major problem. To adult-proof your home so that it is senior-safe may require modifications that can be expensive, but it also involves being mindful of things like loose rugs, doors that can be opened easily allowing the parent to wander outside on their own and stoves that can be easily turned on. Know what you're getting into. Caregiving is a full time job. “Burnout often occurs if a person provides care in addition to working and parenting, and/or doesn't take time for himself. Family issues can arise if the primary caregiver feels others don't help enough,” points out Dickison.

If you decide to take on the challenge, a few things will keep you sane and increase the odds of a successful transition.

Before you begin a caregiving arrangement, assess the situation and understand the care that will be needed and how that care may change over time, says Dickison.

Gather and review legal and financial documents. Make sure documents are prepared and up to date, including wills, trusts, power of attorney and health care proxies.

Draft a budget and keep an expense diary. Track all your receipts and expenses, both for budgeting purposes and also in case any factor into your annual tax preparation.

Know your loved one's health status and medical history. This will help you be able to plan ahead and budget for care. Talk to your loved one early about this need. Ask for permission to have access to medical records and to be able to ask your loved one's physician about his or health status.

Don't ignore legal matters. Get legal consent as soon as possible, advises Ross Blair, CEO of www.PlanPrescriber.com, which offers comparison tools and educational materials about Medicare. Meeting with their doctors, discussing treatments, and doing all this without your loved one's consent could be putting you at risk. Have them sign a consent form so their doctor has the legal ability to discuss their needs with you. Consult with an attorney to see if your parent needs to grant you a “durable power of attorney” that includes the ability to make decisions relating to their health care. “Don't wait for a health crisis to make these types of decisions.”

Don't go it alone. “This is a big job. Decide what you can do and recruit relatives and friends to help,” says Dickison. Don't make all the decisions yourself. Include all affected family members and include your loved one.

There are many agencies that can provide caregivers for in-home care, full-time or in support of a family caregiver. Find out what's available. “Some wealth management firms offer daily money management as an option in a 'family office' suite of services. The firms make home visits to help with bill paying, filing medical claims and other recurring tasks. Carefully scrutinize anyone offering this service. Visit www.aadmm.com for the American Association of Daily Money Managers,” suggests Bill Losey, president of Bill Losey Retirement solutions, an investment advisory firm.

If possible, send your parent to an adult day care center. This will give them something to do during the day, force them to socialize with other people with similar problems, and make them feel productive, says Raphael Wald, a psychologist and neuropsychologist with Palm Beach Psychology Associates. “All this will decrease the likelihood of depression which is very common in people with dementia.”

Make sure too, that you have your own support system and leisure time. “The more agitated and 'burnt out' you become, the worse off your parent will be. You will be unable to care for a family member appropriately if you are not caring for yourself,” says Wald.

Be conscious of costs. Look into options for financial aid. People who provide unpaid care for a loved one may qualify for payments for their work. “It's not much, but if the person you're caring for is eligible for Medicaid, a program called 'Cash and Counseling' might be an option,” says Blair. Call Medicaid to find out. If you're caring for someone with long-term care insurance that includes home care coverage, their insurer may compensate you. Ask about this benefit and if there are any restrictions. There is a program for veterans called Aid and Attendance that is for veterans and their surviving spouses to help offset costs in-home and resident care, (www.veteranaid.org). Know what prescription drugs your loved on is on. Make a list of their drugs and always have it with you, include names, dosages and frequency. Once you've got a list, check on mail order pricing (there is a tool on eHealthInsurance.com that can help you do that). You can also use a prescription drug plan comparison tool each year during Medicare's annual enrollment period to compare prescription drug plans side-by-side and make sure you're getting the best price. Make sure you get all of your parent's Medicare benefits. Medicare offers benefits that many people don't know about such as contributions to home health care and supplies.

While there will be challenging days for sure, says Dickison, “Family caregivers often report the experience as rewarding, especially the bonding that occurs from spending time together.”



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Comments
16 Comments.


Comment #2 by KenBDG posted on
KenBDG
On Sundays we are publishing personal finance topics that may interest readers. It gives me a little time off.

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Comment #3 by Anonymous/Paoli (anonymous) posted on
Anonymous/Paoli
This Dementia article is certainly connected to finances, imo.  I went through this with my mom when she was alive and if they have other serious medical problems and one has one's own medical problems, it may not be possible to care for them at home.  I was able to find a nursing home just a few blocks from my own home (which I had at the time) and was able to visit her often, bring her things and also bring her to my home for visits and meals.  I was also able to monitor the treatment she was getting at the nursing home to make sure she had no serious issues.  Once they become seriously demented, they no longer may be able to recognize the caregiver or even know where they are.  It can be heartbreaking to have to reintroduce yourself to your own mom or to be mistaken for someone else.  As much as we may want to do good by our parents, dementia can open up a life of Hell on earth for those who have it and for those who love them.  Our society has yet to take up the challenge of this horrible disease and how to prepare love ones how to deal with it.   It's become the "unspoken" horror of our society and I thank Sheryl for having the courage to even post about it in this group.  Dementia has taken the Spiked Crown of Thorns away from cancer.  At least there is a chance to survive cancer nowadays depending on what kind you get etc.  Once Dementia hits, at this point in our society, it just opens up the door to a living Hell for those who have it and for caretakers.   Have a nice day.

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Comment #4 by Anonymous posted on
Anonymous
#3 - VERY well said and I totally agree with you.

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Comment #5 by OC Steve (anonymous) posted on
OC Steve
This is a very upsetting subject for me.  I am involved in care for one of my parents.  They currently have the funds for a 24/7 care by an in-home non-medical agency.  We are spending about $80,000 a year, a little less than skilled nursing (which she really does not truly need yet).  When mom started on the road, she was falling down when my dad was not home with her and she broke/had replaced two hips, a knee and a femer bone.  Eventually a pacemaker was found to be necessary to supplement dropped heart beats.  I must be very candid and direct, the family has made many mistakes in dealing with this situation.  My dad never wanted to get an official diagnonsis, but she does have cognitive impairment that is sever (from a newer doctor we involved).

As the oldest of 4 kids, I am very involved in any problems that occur with the 24/7 care and am the emergency caregiver when the agency ****s up and the caregiver does not show up (happens fairly often).  As an accountant, I handle their finances and taxes and have done so for the last 5 years.  Having a brother (married, local executive) and a sister (out of area) that do not want to get involved (time only, no money contribution yet needed), it has been hard for my RN sister and me to keep it going.  There are good and bad (some very bad days/nights).  We have been so unprepared.  The medical power of attorney is very critical and having a DNR order is important too.


This is a topic that many many many families will need to discuss some day.  Just don't let it kill you in the process.

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Comment #6 by Sherry (anonymous) posted on
Sherry
Good article! There are no easy answers here.

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Comment #7 by Anonymous posted on
Anonymous
Just lost my Mom to Alzheimer's about a month ago. Very horrible thing watching her go through it the last seven years.

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Comment #8 by niniss posted on
niniss
This topic touches my nerve like no other.  I am that caregiver - although my mom doesn't have full dementia, she has PD and started experiencing some dementia symptoms (her doc says it's common for PD patients to eventually develop dermentia).  I have been taking care of her full time for more than 3 years now (tried taking care of her while i was working but it was just too much for me), and have to say that it only gets harder as time goes by.  Two and half months ago she fell off her bed at night, her ear almost torn completely off by the night stand drawer.  I was so horrified by the blood and cried like a baby on the way to the emergency room, she was like a brave little solider that night but soon became too weak to move (from all the bruises) and confused or problematic mentally.  As a result, i had two sleepless and stressful months thereafter.  Watching my youth fading away in the mirror, a sense of panic and a tad of sadness overpower me, i feel like giving up.  But i know i can't.  Nursing home is out of question in my family and i wouldn't trust a stranger to take good care of my mother either.  I just have to believe that God had his plan when he decided to let my woke up from near death at birth.

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Comment #9 by pearlbrown posted on
pearlbrown
Thank you all for having the courage to share your heartfelt stories about your experiences.   Your commitment and dedication to taking care of your loved ones under extremely difficult circumstances is admirable and worthy of deep respect.  

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Comment #10 by Anonymous posted on
Anonymous
My husband had a head injury in a drunk driver car accident in 1984 and the neurologists at that time said the brain heals itself. I told them that my husband needed help but no one could see it but me. In 1995 he was put on disability because of his physical disabilities caused by the accident and 3 years later finally diagnosed with dementia. I had to retire in 2008 to care for him 24 hours a day. He passed away about 6 1/2 weeks ago. It never was a chore but a pleasure to care for the man who cared for me and our family for so many years, many times working 16 hour days and 7 days a week. There is no situation in which  I would have left his care or my care to our children. Nursing homes, or home health care etc is where I would have turned to for help. I can't tell you how important it is to have a will, all of your POA papers, living will papers, and healthcare decisions made and signed before it is too late. We did this in our 50's. Don't leave this burden to your children. These papers can be updated as your situation changes and let your children know what you have done and keep them informed. Our children were and continue to be such a rock to lean on, to talk to. I welcome  their visits, phone calls and offers of help. As far as the healthcare papers one would need local hospitals sometimes will have very detailed papers that you can check different boxes for many situations making your children's burdens much easier. Give a copy to your doctors, your local hospitals, your children. These can be updated and changed as you wish.

I have friends that still at this late stage in their lives, (some are widows and widowers) who refuse to do this. I tell them if you love your children that this is the untimate gift to them.

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Comment #11 by AnonymousPaoli (anonymous) posted on
AnonymousPaoli
#10  You are so right about having the proper documents.  I went one step further.  I have a beloved DD who refuses to even consider the fact that one day something could happen to me.  I survived a cerebral aneurysm, subdural hematoma, cancer and so many other problems without thankfully it ever stopping me from doing all my responsibilities for her and the family.  Sooo she thinks these other horrors can't touch me and refuses to discuss anything to do with death or my incapacibility.  What I did to help her was to get a spiral folder and I sat down one day and typed up pages and pages of all the information she has to know for "just in case".  I told her where it is and if anything ever happens to me she needs to get it and read it or get a best friend to read it for her so she will know where all the necessary documents are.  I have prepaid funerals and plots for the three of us and yet she has no idea where the information is.  This is also in the spiral folder. 

If you have loved ones who also do not want to discuss these matters, you might want to type up or fix up a special folder for them to open at the necessary time.  I did this also for my DP incase I go before him.  He has a special folder for documents important to him.  It was very depressing having to type all those pages for "If I am no longer here" because no one wants to think of their own passing or incapacity but when in need, we must do what our loved ones  won't. 

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Comment #12 by pearlbrown posted on
pearlbrown
I have taken care of 4 senior relatives and now my "tribe" is one senior (in fairly good health, thank goodness but in definite decline) and me - widow, no siblings, children, or cousins.  Fortunately I have good and wise friends to whom I can entrust carrying out my wishes - one has the medical POA and another the financial POA.  I too have a similar "journal of final instructions", with detailed information, including online IDs and passwords, and it is reviewed and updated every six months or as needed. 

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Comment #13 by Anonymous posted on
Anonymous
I just recently lost a parent who while he did not have dementia, he was totally bedridden after his motor vehicle accident after he got a cervical spine injury over nine years ago.  Many of the health related directives and financial information was not set up.  My father was from the "old country" where no one hardly ever arranged for that.  In most cases, people with his injuries end up in a nursing home where that often is the end stage. I came across a few people who died in one of those nursing homes before he returned home after the accident.  If it was not for the fact that my sister is a RN and I already managed the daily household functions before the accident was it possible for him to return home for care.  The real difficult part of the paralysis is that the patient is unable to communicate any possible serious symptom that is occrring inside the body.  From his hospitalizations, he got nearly every possible germ and infection that you can name.  His body chemistry had to be constantly monitored.  Being immobile brings along a host of potential life threatening conditions.  It was a 24/7 monitoring situation nearly all of the time.  It took a toll physically on all family members with the sleep pattern disruptions.  But, we were willing to take on the care because I know that he would not have wanted to spend the rest of his life among strangers.  For this kind of unexpected change to the family unit to happen completely changes the family situation regardless of how much planning that you do beforehand.  That planning will help to ease the initial work that has to be undertaken by the others in the family. 

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Comment #15 by Mercedes P. (anonymous) posted on
Mercedes P.
This article on dementia really hit home. I know first hand how difficult it is to deal with a loved one who is very ill. Aside from breaking your heart on a daily basis, it can be a very draining and time consuming task. The tips you have provided here are of great benefit to those who are caregivers for their relatives. I especially like the point you made about including other family members to help with caring for the loved one in need. Not only will this take some of the stress off of you, it will allow your loved one to actually still feel loved, and not like a burden.

 

I do suggest that if the task gets too overwhelming, that you seek the aid of professionals. My family and I chose to find reliable <a href"http://www.njseniorcare.com/">home care in NJ</a> for my grandmother after my grandfathers passing. Since we're all either in New Jersey or relatively close, it was a very smart decision as we are still able to visit and confirm my grandmother is receiving the utmost of care.



 
Thanks for sharing!

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Comment #16 by Anonymous posted on
Anonymous
 

Visiting Angels is indeed a blessing. I needed someone to care for my mom who lives in Palm Beach Gardens, FL.   She suffers from Alzheimer’s and I live in England. I was able to choose the right caregiver for my Mom.  The person was experienced and had excellent credentials. I have peace of mind knowing that Mom is in capable hands. You should check them out at www.visitingangels.com/palmbeaches (561-328-7611) if you need senior care services.

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Comment #18 by paoli2 posted on
paoli2
#16 & #17  Do any one of you know what type of charges there are for Visiting Angels and/or the nursing home #17 gave url for?  I checked #17's and can find nothing as to cost.  Is Visiting Angels on an hourly payscale?  Thanks for any additional info. 

1
Comment #25 by Anonymous posted on
Anonymous
I just visited the URL and a couple of items...there is a "general" Q&A which states its costs are lower.  I notice also that the organization seems to be franchised.

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