Caregivers are Depressed

August 12, 2013

Filed under: Caregiver Issues — Alexis @ 11:46 AM

Interesting concept in this article – one of those things that you don’t think of on your own, but when someone else verbalizes it, you say, “of course.” The idea is that caregiver stress is in part driven by a tension in the caregiver’s own psyche between giving up who she has been, while at the same time both embracing and rejecting the role of caregiver. It’s a lot for one heart to handle. Read the New America Media article here.

Department of Public Health Survey on Health Needs for People with Disabilities

May 20, 2013

This landed in my inbox. It took about 5 minutes to fill it out. Due date is May 31. Here are the details:

Help influence health care in Massachusetts! The Health and Disability Program, part of Office of Health Equity at the MA Department of Public Health (DPH) is conducting a health needs survey for people with disabilities in Massachusetts. The Office of Health Equity promotes the health and well being of minority populations, including people with disabilities throughout the Commonwealth. Results from the survey will be used to determine how best to address the current public health needs of the disability community. To that end, first, please take a few moments to complete the health needs survey yourself here.

DPH would like to get a broad range of respondents representing all the facets of the disability community, please forward the link to your friends and colleagues in the disability community and ask them to complete.

Who should complete this survey?

Residents of Massachusetts, over the age of 18 who have disabilities
Caregivers or guardians of adults or children with disabilities
Disability advocates
Staff at community based organizations or state or local government offices that serve people with disabilities
Academic researchers
Healthcare providers
Public health officials or professionals
Health and wellness promotion specialists
Health administrators
Health policy experts
We also invite participation by anyone else who has an interest in the health of people living with disabilities in Massachusetts. Please forward as soon as possible, as the survey link will only remain active until May 31, 2013. We look forward to hearing from you!

This is a voluntary and anonymous survey. The responses are compiled and we do not have knowledge of individual respondents.

Caregiver Holiday Wish List

December 21, 2011

Filed under: Caregiver Issues — admin @ 9:41 AM

My favorite columnist, Michelle Singletary (The Color of Money) has done it again. She always has something spot on and practical to say. This week she cuts to the chase when it comes to caregivers – they are tired. They don’t want bling or stuff that will end up on a shelf. They want help. They want a rest. They want someone to just listen. Michelle’s column borrows from an aarp blog full of gift ideas which you can read here.

Help your friendly neighborhood caregiver take a break.  Happy Holidays!

Thrown into the Deep End

May 18, 2010

Filed under: Caregiver Issues,Uncategorized — Tags: , , — Alexis @ 1:08 PM

Did you see Michelle Singletary’s column this weekend in the Boston Globe? I like her column, The Color of Money. She writes in a straight-forward, honest manner, with guidance targeted at “regular folks” like myself.

This weekend she wrote about essentially being thrown into the deep end of the pool of elder care. If you read her column, you saw that her feelings, questions, fears, and sense of being overwhelmed and without direction are those very same feelings that most children of seniors (or healthier spouses of seniors) are experiencing every day.

While I can’t make your parent or spouse healthier, and I can’t bring back their memory skills, I can make it easier for you to handle your new caretaking role. The elder law attorney’s job has many aspects – for one, I help elders stretch out their assets to stay at home for as long as possible.

How do I do this? We look at MassHealth benefits and Veterans Benefits as a way of bringing more help into the home. We look at selling the home and building an in-law apartment on a child’s house. We explore setting up a contract between parent and child that allows the child to quit her job and care for her parent but still earn some income. And if nursing home is a possibility, we explore ways to maintain a healthy spouse at home and also explore various methods of safely and legally transferring some assets to children.

But the elder law attorney’s role goes beyond this – my job is also to pull in other professionals who can help you become a better – and more sane – caregiver. I may invite in an Alzheimer’s coach to teach a family how to work with a family member who is changing before their eyes; a geriatric nurse to guide a thoughtful conversation on wishes for end of life care; a geriatric care manager to create and manage a schedule of home health aides – and more.

I can’t get you out of the deep end of the pool. Life takes our parents and spouses in certain directions. But I can teach you how to swim.

More Reasons to Write up a Caregiver Contract

November 13, 2009

I’ve been writing a lot about caregiver contracts lately. That’s because they represent the ideal solution for so many families.

Many children become part-time or even full-time caregivers for their aging parents. Sometimes a child needs to be paid for this – usually that is the only way she can afford to leave her job in order to stay home and care for Mom. And in some families, the parent insists on paying the child, or at least contributing to groceries and utilities – because she doesn’t want to feel she is taking advantage of anyone or being a burden.

Earlier posts describe why a written caregiver contract is important to prepare for the possibility of a future MassHealth nursing home application, but here is something that would apply more immediately:  in addition to drafting a good contract, an elder law attorney will also set the family up with a payroll service that will make sure the child receives the benefits of an employee. Namely, the child will have two special protections.

The first is worker’s compensation coverage. Have you ever helped a frail elder with a shower? How easy is it to hurt your back? Very. With a proper caregiver contract arrangement, that child can collect worker’s comp from her injury.

The second protection is the unemployment benefit. Sometimes, no matter how good a job a child does of keeping Mom at home, there comes a time where the care Mom needs exceeds what the child can provide, and she must move to a nursing home. Now the child is unemployed.

For so many families, paying a child to care for the parent is the best solution. Having informal, unwritten understandings is typical, but leaves both the parent and child open to too many pitfalls. By working with an elder law attorney to craft a good caregiver contract and to set up a payroll service to take care of the deductions and taxes, both the parent and child will be much better protected in the long run.

Paying Your Children to Care for You? Put it in Writing.

August 30, 2009

As they need more help with daily tasks, many parents prefer to have their kids helping them rather than hiring an aide. And many children want to be helping their parents, if only they could afford to quit their job.

One solution is for the parent to hire the child. I discuss some of the nuts and bolts of how to draft a caregiver contract in another post. I also previously discussed the advantages of caregiver contract in a down economy.

The message for this post is that if you plan to hire your child, or if you plan to work for your parents, everything must be in writing. If the parent eventually needs to apply for MassHealth, your chances of having the application approved significantly increase if the agreement was in writing during all those years that the child provided care. If it is not in writing, MassHealth may well declare that any money passing from the parent to the child was a gift – and a gift disqualifies a person from receiving MassHealth assistance.

Working with an elder law attorney will improve your chances of having the agreement approved by MassHealth, because an elder law attorney understands what needs to be in the contract not only to satisfy MassHealth, but also to help you comply with Social Security laws, income tax regulations, and employment laws.

Always Keep Time & Expense Records When Helping Another

August 6, 2009

So many children, nieces and nephews, and good neighbors pitch in to do heavy lifting for an aging or disabled family member or friend. You may be running errands, cleaning out a basement, doing weekly grocery trips. We do these things on a volunteer basis, usually receiving just reimbursement for purchases made. And when the hours pile up – like cleaning out a house or overseeing home remodeling – elders often insist on paying their helpers for their time.

If you are doing this sort of work for an elder or disabled person, it is imperative that the person you are helping (or you yourself, if she can’t), keep good records of expenses and time spent.

While this may feel wrong to you – afterall, you are doing this work out of kindness, it’s not a business arrangement – a lack of records can spell big trouble for the elder or disabled person later. If they will ever be turning to MassHealth (Medicaid) for care, whether at home, assisted living, or in a nursing home, MassHealth will examine the last 5 years of the applicant’s bank records. She will need to explain – and document – why she was paying you.

Without accurate records and receipts, MassHealth will likely reject the elder’s application. At that point, the only way for her to get the care she needs from MassHealth will be for you to return all the funds she paid you.

While it may feel awkward, do yourself and the person you are helping a favor and keep good time records and all receipts. And carry on with your good work.

Caregiver: Care for Yourself, Too

June 1, 2009

Filed under: Caregiver Issues — Tags: , , — Alexis @ 9:34 AM

Caregiver burnout is a dangerous side-effect of dedicating your time and energies to the care of a loved one. All the physical activity, combined with the worry, isolation, and frustration, make for a dangerous recipe. Families frequently come to me when Mom got sick from the exhaustion of caring for Dad.  Another common scenario is a child becomes worn down and finds herself spending lots of time in doctors’ offices for her own ailments, and the family asks me to make different arrangements for the parents’ care. 

It’s hard work caring for another – physically, emotionally, mentally. If you are a caregiver, you must take time for yourself. Go for walks, take an art class, join a support group where you can let off steam and also get some ideas and encouragement from other souls in the same boat. To take time for ourselves, most of us need it to be compulsory: so sign up for an exercise class or a walking group, or find your own buddies to cycle with a few mornings a week. Whatever the activity, if you’ve scheduled a time and others are expecting you, it’s more likely you will follow through. 

There are many places to look for support and ideas, just spend a few minutes online and you will find them. One good place to start is the Alzheimer’s Association Caregiver Stress Check. Joining a caregiver support group is an excellent thing to do and can often result in long-lasting friendships. Call your local senior center for a list. 

Most importantly, get outside! It’s the perfect time of year for that. Take good care.

HBO’s The Alzheimer’s Project: Grandpa, Do You Know Who I Am?

May 19, 2009

Filed under: Alzheimer's,Caregiver Issues — Tags: , , — Alexis @ 3:51 PM

This weekend I watched the film on grandchildren caring for grandparents with Alzheimer’s.  I was floored by the patience and persistence these kids displayed.

One theme that the film highlighted with “staying in the moment.”  This is something we all did as kids (remember focusing on a ladybug crawling up a blade of grass for minutes at a time, oblivious to anything else in the world?), but we lose as we mature.  Turns out we end up back there towards the end of life.

Spending time with an Alzheimer’s patient sometimes means playing cards or other games, discussing what they see out the window at that moment – and not discussing what happened this morning or what you will be doing tonight.

This also touches on the theme of “fiblets” – the notion that you cannot change the reality of an Alzheimer’s patient, so you go with their reality instead.  They are in their moment – go and join them there.  My favorite Alzheimer’s coach, Beverly Moore, tells this story:  It is about 3 p.m., and a woman she is working with is convinced that Johnny should be coming off the school bus any minute.  There is no way to convince her that she is 85 and her little boy is a 60 year-old accomplished engineer.  Instead, Beverly agrees and steers her into the kitchen to make tea while they “wait for the bus.”

It is a shift in the way we are used to interacting with people, but if you can force yourself to return to your childhood habits and “stay in the moment” you can turn what could have been a frustrating experience into some joyful time spent with your loved one. 

HBO’s The Alzheimer’s Project: Caregivers

May 18, 2009

This weekend I watched the film Caregivers (don’t you just love On Demand?).  One theme that jumped out was the isolation that caregivers suffer.  Several of the film’s stars (I think that’s a good name for them) talked about how very quietly the invitations to events and gatherings stopped.  Not only does this damage the patient, but even more so the caregiver who needs more than ever to maintain her connections to the world.

This happens with families with special needs children, as well.  They lose their friends and even family as their child grows past the infant years. 

It all comes down to lack of knowledge.  Very few, if any, of us innately know how to interact with a person with mental deficits or behavioral issues.  The good thing is, it’s not too hard to learn. 

If you have a friend, neighbor, or family member who is caring for an individual with Alzheimer’s, another form of dementia, behavioral issues, mental retardation, Turret’s Syndrome, or any other type of disability that affects the mind, please – don’t shy away from them – they need you in their life.  Just ask your friend – “I would love to spend the afternoon with you, please tell me what to expect from Vanessa, and please give me some tips on how to interact with her.”  There are also so many books and websites devoted to various special needs and highlighting skills for interacting with the special needs person.

And if you are the caregiver and you have noticed that your friends and family invite you out less frequently – call them up, explain that you understand why they have backed off, and then ask if you could describe a few tips for how to spend time with your loved one. 

All it takes is a little bit of knowledge, patience, and a willingness to try something new.  

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