Thursday, April 12, 2018

How to Hire In Home Care for A Loved One

Family caregivers cannot do all things all the time. Recognizing when you need outside help is good for you and your loved one.

What’s the difference between types of in-home care workers? 

Personal Care Assistants (PCAs) are not licensed and have varying levels of experience and training. They serve as helpers and companions — providing conversation, bathing and dressing, neighborhood walks, light housekeeping and meals. They can offer transportation to shopping and appointments, as well as prescription pickup. Training requirements vary by state, and some states do not have formal requirements. PCAs are the least expensive care providers, but they are typically not covered by Medicare or other types of health insurance. The median hourly wage is $10.54, according to the Bureau of Labor Statistics (BLS), but the hourly charge for this and other in-home health service can be considerably higher in tight markets and urban areas. Expect PCA services to be an out-of-pocket expense. 

Home Health Aides (HHAs) monitor the patient's condition, check vital signs and assist with the necessary parts of daily living, including bathing, dressing and using the bathroom. HHAs also provide company, do light housekeeping and prepare meals. HHAs are trained and certified, and requirements differ from state to state. The median hourly wage is $10.87, according to the BLS.
Licensed Nursing Assistants (LNAs) and Certified Nursing Assistants (CNAs) observe and report changes in the patient, take vital signs, set up medical equipment, change dressings, clean catheters, monitor infections, conduct range-of-motion exercises, offer walking assistance and administer some treatments. All medical-related tasks are performed as directed by a Registered Nurse (RN) or Nurse Practitioner (NP). CNAs also provide personal patient care — such as feeding, dental help, bathing, bathroom assistance and home tasks that include changing bed linens and serving meals. Median hourly wage for LNAs is $12.78, according to the BLS. 
Skilled Nursing Providers meet federal standards for health and safety and are licensed by the state. They manage, observe and evaluate your family member’s care, and provide direct care that nonmedical and home health aides cannot — including administering IV drugs, tube feedings and shots; changing wound dressings; providing diabetes care; and providing caregiver and patient education. Some are trained in physical therapy, occupational therapy and speech therapy. Medicare covers home health skilled nursing care that's part time and intermittent, and arranged by a Medicare-Certified Home Health Agency (CHHA). Median hourly wage is $21.20, according to the BLS.
Registered Nurses (RNs) hold a nursing diploma or associate degree in nursing (ADN), have passed the NCLEX-RN exam administered by the National Council of State Boards of Nursing (NCSBN) and have met all the other licensing requirements mandated by their state’s board of nursing. They provide direct care, can assist doctors in medical procedures, offer guidance to family members, operate medical monitoring equipment and administer medications.

Step by Step: Hiring a Caregiver

Step 1.

With your loved one, write down needs and limitations, level of assistance needed, likes and dislikes, expectations and doctor recommendations. If your family member is covered by long-term insurance, Medicare or Medicaid, you’ll need a doctor’s report confirming that the need for in-home care. Medicare does not cover personal care if it is the only care needed.

Step 2.

Find a trustworthy, compassionate and responsible caregiver. Do you feel best going through an agency? Friends? A registry?

If the answer is:

An agency

Regardless of whether your family member is Medicare-eligible, compare and research agencies in your area by using the Medicare guide to patient-rated agencies and arrange a consult. Before you sign an agency contract, review our checklist of important questions. Ask them. 

Prescreened workers. Caregivers have undergone and passed a background check.
Relevant experience. Agencies are likely to have some caregivers with experience in caring for people struggling with the same illness or condition affecting your loved one.
Backup care. If the caregiver is sick or doesn’t work out, an agency usually can find a replacement quickly.
Addressing problems. Concerns and complaints are reported to and handled by a supervisor.
Fast upgrades. If care level or diagnosis changes, most agencies can quickly provide a worker with more training.
No paperwork. You pay the agency. They take their percentage, pay the worker, and handle payroll, taxes and scheduling.
Liability protection. If a caregiver is injured on the job, the agency covers the cost. 

Expense. You pay more — sometimes substantially more — for an agency-provided caregiver.
Limited negotiation. Individuals are generally more flexible about hours, overtime and duties than agencies.
Minimum hours. Many agencies do not allow a part-time schedule.
Little choice. The agency chooses the worker, who may or may not mesh well with you or your family member.

Option 1: Ask friends and neighbors who have employed caregivers for recommendations, names, phone numbers and hourly rates of those they found to be outstanding. Get specifics. Your neighbor’s priorities might not be yours.

Option 2: Consult the community. Leave your name and number and the particulars of the job — including needs and hourly wage — with the receptionists at nearby houses of worship, senior centers, local gyms, yoga studios and community centers.

Option 3: Call your Area Agency on Aging and ask if they have recommendations.

A registry

Local — and sometimes state — employment registries will have lists of available nurses and aides in your area. You call the person directly. 

Flextime. It is more likely you will find a part-time caregiver or one who can work an unusual schedule.
Spend less, pay more. Without the higher agency fee, you may be able to pay more for a more skilled or experienced provider.
Your rules. Agency caregivers must follow agency rules. With a nonagency caregiver, the two of you and the person needing care can figure out what works for everyone.
Better fit. You may be more likely to find a caregiver who speaks a second language, shares interests with the care recipient or has personality traits your loved one will appreciate. 

Time. A DIY search and screening can take days to weeks. Agencies often can arrange next-day care.
Emergency coverage. Sick days, vacation or a fast departure for a new job can upend everyone’s schedule. There’s no fallback plan unless you arrange it.
You investigate. You will need to screen and verify credentials.
Paperwork. You are responsible for getting an Employer Identification number (EIN), and for withholding and paying Social Security, Medicare and unemployment taxes. You also must confirm that the applicant can work legally in the United States. 
Protection. Agencies insure their own. You may be held liable for an on-the-job accident unless you buy liability insurance that covers the caregiver. Workers’ comp — which covers lost wages and medical care — is required by some states and recommended in all by some legal experts.
Training. Agency health aides are trained. You may want to pay for a training class or refresher.
You’re the boss. The person who handles your complaints is you. 

Step 3.

You — and your loved one, if possible — should interview applicants together. Prepare written questions. Be clear and honest about job requirements.

A major consideration when hiring a caregiver is the associated cost. In some cases, you may be able to get help paying for in-home care.

Friday, January 26, 2018

It's Never Over

By Karen M.

A year ago today was the last time I heard my husband say my name coherently. It was a year ago I sat with him and wondered how much longer I could go on. I thought about him struggling to speak, shuffling as he walked, wearing a catheter and briefs, starting to have trouble feeding himself and selfishly I was worried about finances and impacts on me and the kids and wondered how long it would be before Alzheimer’s Disease eventually took him. I figured I still had lots of time.

I found out the heartbreaking answer just a few days later when I got the call he was “actively passing”.

I have learned so much in the past year. I have learned about friendships. I have learned about empathy and kindness and I have also learned about selflessness and selfishness. I have learned about the kind of loss you think you understand until you actually live it. I have felt an emptiness inside of me that I didn’t know could exist or was possible. I felt a perpetual sadness that there is nothing in this world to compare to or which can lighten. The only relief is sleep, but then you wake up. Guilt is so ingrained in me I can’t remember a time it wasn’t part of my being. I have felt helpless as I watched my kids mourn their father. I have buried my husband and yet I still cry for him, long for him, ache for him and miss him. Terribly. I thought I had cried as much as possible before he died. I was wrong. My eyes now have dark eyelids and seem to be constantly swollen.

Yes, a year ago I was struggling to be a caregiver and a mother and somehow keep myself sane. Now I am struggling to recall all of the memories I am terrified of losing and a few I should probably forget. And now I face the challenge of a future alone, without Jim and starting all over. It is like being fresh out of college and trying to decide a path that will best lead me forward to whatever my future holds. My passion is Alzheimer’s Advocacy and education. That is what I do best and I what I want to do. It just doesn’t pay all the bills.

I look at photos and watch videos. I see our love and our excitement together. I see our hopefulness in a future laid out before us. I see Jim as the disease progresses and it all triggers the same feelings that crept in each time he showed how much he was changing. So I stop looking and I stop watching. Then I start to feel a void. A new guilt. Trying to move on. Trying to stop the pain and misery. And I go back to the darkness. There are good moments. The kids and some friends have made sure of this. But there is always that nagging feeling that something just isn’t as it is supposed to be. Something always seems to be missing….

And yet, we were lucky. Most Alzheimer’s patients aren’t able to communicate so late in the game. They usually can’t remember the loved ones who visit or care for them. A year ago Jim said my name. He knew his name. He still wanted to watch the kids play ball (another regret which equals guilt: not taking him because I was worried about the cold….if I had only known) and he could still hug me and tell me he loved me. He loved me. To have had someone intimately know you and still love you with the intensity and the depth that man did me is something you just don’t get over. It is rare, it is special and I cannot express my sorrow for no longer having that kind of support and unwavering adoration. It only comes along once in a lifetime and there have been moments I wonder what I have to look forward to. It seems it will all be a wash from here on out. Yes, we were so lucky in so many ways. The support from our community. The friends who rallied round. The strength we gave each other. But here I am a year later and I am just as lost as I was on that fateful day I got that dreaded call.

I have the kids to watch grow and to parent and to comfort along the way. But what am I supposed to say as they watch their friends interact with their Dads and my children don’t have one? They had a great one and he wanted nothing more than to live long enough to be there for their childhoods and young adult lives. That was the one thing that would make him tear up and cry. Losing his children. Them losing him. Jim was such an amazing man and even better father, it is such a loss for them on so many, many levels. I can only fill in so much. He was so handy and smart and funny and witty and dropped everything to do something with them. They are sadly missing out.

I couldn’t save him. I couldn’t keep him from falling victim to this terrible death. I know it wasn’t my fault, but as anyone who has cared for and loved someone who has lost a battle to a disease they fought against with all their being, there is guilt which never strays far away. And there is guilt for not knowing what was just around the corner. And guilt for losing patience. And guilt for not fulfilling bucket lists and guilt for worrying about the wrong things and not having the right conversation at the right time and not being ready and not knowing that the very conversation you are recording and taking for granted would be the last. For falling asleep when you should have been awake, even if it was 4 am. For letting go but wanting deep down inside to hold on forever. Being in a hurry to get home to fix dinner, or do the laundry or relax….there is plenty of time later. But then you don’t really feel like it and there are few dinners that are made and even fewer that taste good. There is no more relaxing and now you only do laundry for three. And you only cook for three. You only travel as three and only need three tickets for a show. And you now have all the “guy” chores to do and the last thing you ever feel like doing is getting out of bed and doing any of it. When you finally decide you want to do something, either the kids have plans with friends or your friends have plans with their husbands. I haven’t braved a movie solo or dinner alone. It will happen, I just haven’t yet. I will. I know I will. I have to. One day soon. It is my life. My new normal. I can go hiking by myself and travel unescorted and do whatever I want to do, just sans a partner. It takes some getting used to and I haven’t quite wrapped my head around it yet. But I will.

Mourning is a process. A long, slow process. No matter how much you want to get over it, how much time you had to prepare, how ready you thought you would be….the heart and mind aren’t always simpatico and they both run at their own leisure.

A year ago I could go visit Jim. And bring his laundry home to wash. And the kids could come with me and see him, talk to him, tell him about their day and what they were doing. They could play catch with him or sit outside in the rocking chairs. We could see his smile and know he was still with us. Even if it wasn’t the life he wanted. Even if is wasn’t quite the same Jim. And then I know I am so very selfish for wishing another day with him. I really don’t want that because he didn’t. I want the old Jim. Before the disease. The one I fell in love with. But the sick Jim, the one who left me once and for all, he taught me more than anyone ever has. He taught me grace and acceptance and tenacity and patience and the real meaning of love. He showed me each and every day. I am forever a changed woman and forever grateful.

So now I am alone with the kids and no longer have the worry of his care. Or what is coming around the bend. Or what his wishes might be. Or when will it all be over. It is never over. Alzheimer’s takes them, but leaves us with the loss and pain that sticks around for a long, long time.

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Sunday, January 21, 2018


Guest blogger: Kamaria Moore

Hi everyone,

My name is Kamaria Moore and I am the primary caregiver for my mother, Mary. She was diagnosed with early onset Alzheimers at 58, when I was 28. She is now 59 years old and I’m 31. My mom was previously living independently in a three-story family home, but recently has been hospitalized. Doctors have been unable to determine her diagnosis, so we’re in a state of limbo where we don’t really know how long she will be there and what her functioning capacity will be afterwards. I am spending as much time with her as I can at the hospital, and I take care of all health care, living logistics, and fiscal responsibilities.

My husband and I just got married on May 7th and celebrated our honeymoon in Puerto Rico. I work for the state of Massachusetts. As difficult as it was not having my mother to assist with wedding planning, it was even more difficult not having her at my wedding because of her sudden hospitalization. The juxtaposition of one of the happiest days of my life with serious concern over my mother’s health was incredibly difficult for me, but we still managed to have an awesome time and showed her all sorts of pictures and videos afterwards.The Massachusetts/New Hampshire Alzheimer’s Association chapter has been incredibly helpful to me, and was instrumental in helping me line up initial supports when we received the diagnosis. One example was a support group for young people whose parents have early onset. I attended this group pretty regularly for about a year, but I often felt like I shouldn’t say anything because my experience was so different from everyone’s. I was the only person of color, and most people’s parents had either a husband or wife to assist in the caregiving. Because of this, their experience was mostly about enjoying their role as caregiver, and being able to enjoy the time spent with their parent. While I appreciated everyone’s shared experience, I felt like I couldn’t honestly express the difficulties I had with being a caregiver. This feeling led me to want to share my own story, which led me to this profile.

During this time, I have recognized my own strength. I have cared for both my parents off and on since 2007, and during this time have been able to obtain and keep full time employment, maintain healthy relationships with friends and family, purchase a home and get married. I am becoming someone who can balance life really well, including balancing care for mom with care for self. I’m strong enough to be there for her and know that it is ok to want my own life, although it is still something I struggle with often. I have learned that it’s okay to maintain my own life and happiness in order to be the best caregiver possible.

I’ve been able to use resources to fill in the gaps. My mom has really found a place in church so my cousins take her and it gives me a break. I’ve learned through caregiving that my strengths are logistics, so I take care of those, and my family takes care of providing her a social and emotional output. She attends an elder service day program which provides her with social interaction and support. She still maintains a few hobbies, including coloring which she is really proud to show off!

If there’s anything I hope comes from this profile, it’s that someone out there sees it and sees a reflection of themselves and their stories in it, and for just a second feels a little bit better.

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