Caregiver

Actor and former Brat Pack member Rob Lowe was known for a long time for attempting to live up – or would that be down – to the titles of some of his late 80’s and early 90’s movies, such as Illegally Yours and Bad Influence. However, the former West Wing cast member found redemption by going back to his ABC Afterschool Special roots and is now a noted philanthropist who has helped raise millions for breast cancer awareness and research. Though he had a relapse with a certain DirecTV ad, he has made up for it with a series of educational videos on having family conversations concerning long-term care, featuring erstwhile Mrs. Terminator Maria Shriver.

Lowe’s father was diagnosed with lymphoma at age 50 – the actor’s current age. Later on, when his mother also fell ill, his financial situation and career allowed him and his brothers to invest the time and resources to take care of her, something which he recognizes is not an alternative for most people. “Many families don't have this kind of flexibility,” he wrote in an op-ed piece on CNN.com. “The time and cost of caring for a loved one can be both rewarding beyond measure and financially and emotionally debilitating. According to the Department of Health and Human Services, 70% of those who reach 65 years old will need long-term care of some kind. The time to plan is now, and planning begins with family discussions about what many of us will need as we age.”

Long-distance caregivers have to rely on primary caregivers who are at the scene 24/7. If you are the long-distance caregiver of an aging parent, the primary caregiver could be your other parent or a paid, professional caregiver. In either case, you may understandably wonder how well caregiver and care receiver are holding up, whether they need more help, and how you might procure them that help.

Lightening the burden

Let’s say that your father has always been kind of a lovable mess, and in a way your mother has always taken good care of him. But know your aging father has now developed a physical and/or mental condition that requires around-the-clock supervision and management, and your mother is in over her head. You may have noticed that she sounds exhausted when you talk to her, but she may be too proud or too embarrassed to ask for help. You could start by assuring her that she plays a very important role in your father’s care. In fact, even if she does decide to get help, that doesn’t mean she could ever be replaced. Respite care, which would give her a break from caregiving duties, is very flexible. It can be arranged to span several days or only a single afternoon. It can take place at home, in an adult day care center, or at a skilled nursing facility. Most parents wish to age at home, and to achieve that for as long as possible, some sort of home-based care is required. A hired caregiver is automatically persona non grata to some people; if your mother is one those people, you can explain to her that an in-home aid can provide invaluable help and allow her to have more free time for your father and for herself. If still unconvinced, suggest trial period.

Caregivers may not have superpowers but they do have power-ups available that they can use to gain extra abilities, such as the following.

·         GreatCall Touch 3 Smartphone. This Samsung Galaxy smartphone comes with pre-installed applications that allow care receivers to be more independent while at the same time enabling caregivers to keep track of their aging family members even from a distance – updating them on where their relatives are, what they’re doing, and whether they have taken their medications. In addition to all of that, it works just like a smartphone, only it’s much easier to use.

Long-distance caregivers are just as likely to experience the same positive and negative emotions as primary caregivers. Among the negative feelings that caregiving from a distance can elicit are frustration, anger, guilt, anxiety, and worry. In a it’s funny – not funny ha ha, but still –; primary caregivers may think that long-distance caregivers get off easy, but the latter may actually envy the former because they get to actually, physically be there for their aging and/or sick parent. As it turns out, being far away adds rather than subtract to a caregiver’s concerns. They may feel guilty for not being closer, for not doing enough, for not spending enough time with their loved ones. As a result they may try to overcompensate and end up burned out because they try to do too much, and that’s no good for anybody.

Additionally, long-distance caregivers have established a life of their own away from their childhood home. As such they have people like spouses, children, friends, coworkers, and colleagues who count on them. Therefore, they have the added worry about taking time off work, affording travel, and being away from the family they have started. It’s true that long-distance caregivers may not be as physically and emotionally exhausted and depleted as the primary caregiver, but they also need to take a break sometimes, rest, get enough sleep, and talk about their problems; to relatives, to friends, and especially to other long-distance caregivers who may be going – or have gone – through the same. You may find these kindred spirits in support groups, whether online or in your own community.

The following are the impression of three of our staff writers at Discount Medical Supplies, Alberto Chaves, Jennifer Stradlin and David Rose after their viewing of the Documentary “Alive Inside”, the 2014 Documentary by Michael Rossato-Bennet.

David Rose

I remember hearing about the “Alive Inside” movie from the viral video of Henry, and I was taken at that beautiful sight of Henry, with those big pen wide eyes being genuinely happy. I showed it to people close to me and the reaction was the same, goose bumps and tears in the eyes. This movie carries a message of hope that spoke to me deeply. I have always been interested in the subject of how the human mind works, and seeing the awakenings and dramatic changes that the patients went through with the help of music, really made me feel excited on the many possibilities that this could bring in the future.

Watching “Alive Inside” made me think about my Grandpa who passed away 5 months ago. Grandpa was not sent to a nursing home and he was always surrounded by all of us that loved him and stood by his side to his last breath.  After an accidental fall in the bathroom that led him to hip replacement surgery, Grandpa was never able to come back to himself. Some say it was the anesthesia that worsen his dementia, others say it was going through such a traumatic experience all of a sudden after being so healthy (despite his dementia, he was in amazing shape and health).   Alive Inside made me recount the way Grandpa responded when my children and I took our music to him. My daughter plays the piano and sings, my son plays the violin and I sing. Here are a few excerpts from an article I had written on this same subject according to our experience: 

“Grandpa's Recovery through Music

Saturday: Sebastian played a few songs on his violin for my grandpa.  It looked like he truly enjoyed it as he was smiling and tapping his right foot on the floor.  I also believed hearing my son on the violin helped him remember a little bit more of him as his memory has increasingly been failing on him after the surgery.  Sunday, instead of asking who he was like the past few days, when he saw him, he said, "Hi my little Sebastian, how are you?"

The following pieces of advice can help caregivers to deal with the changes in personality and behavior that Alzheimer’s disease brings about:

·         Keep things as simple as possible; say one thing at a time, ask the person with Alzheimer’s to do one thing at a time, and so on and so forth.

·         Maintain a daily routine so the patient gets used to certain things happening.

·         Constantly reassure the patient that they are safe and that you are there if they need help.

·         Concentrate on how the person is feeling as opposed to on what they are saying. For instance, use a phrase such as, “you seem concerned.”

·         Neither argue nor try to reason with the Alzheimer’s disease patient.

These are a few essential things that long-distance caregivers can do, so roll up your sleeves and get to work.

Organize paperwork

Sounds boring, doesn’t it? Like having a desk job in a police department. Notwithstanding that, organizing and updating a large amount of information can be extremely helpful; if it’s hard for a person in their prime to put together their own personal information, just imagine the challenge this could present to an aging parent who needs care. Such information may include the following:

• Full legal name and residence.
• Birth date and place, birth certificate.
• Social Security and Medicare numbers.
• Employer(s) and dates of employment.
• Education and military records.
• Sources of income and assets; investment income.
• Insurance policies, bank accounts, deeds, investments, and other valuables.
• Most recent income tax return.
• Money owed, to whom, and when payments are due.
• Credit card account names and numbers.
• Safe deposit box key and information.
• Will, beneficiary information.
• Durable power of attorney.
• Living will and/or durable power of attorney for healthcare.
• Where cash or other valuables might be kept in the home.

Caregiving is a noble task that is a calling to some, but in many cases, due to several circumstances some people are faced with the task without choice. In many different scenarios a spouse, parent, sibling, son or daughter had to take care of a closed one due to health complications and ageing. In some cases elderly spouses are forced to take care of one another, and perhaps they lack of immediate family, and thus they are forced to take on caregiving duties that could very well be a complete challenge to them. As much an honorable thing that caregiving is it can be emotional and physically draining, and it can be very difficult for an elder person to perform. Yes, they might have the knowhow and the emotional attachment to the care receiver, but the questions arise, is external help needed?

When it comes to caring for someone with MS involves moments of high stress and a top level of physical and mental strength for the caregiver. It takes guts and bravery, someone determined to face the unknown with a fierce gaze. To be a caregiver is not for those faint of heart.

One important aspect to always keep in mind when caring for someone with MS is the relevance of staying calm and assess the situation as it happens to the patient. Multiple Sclerosis can be unpredictable and both patient and caregiver might not know what to expect from one week to the next. The patient could confront intense mood swings and physical challenges that might lead to necessary changes in their surroundings.

Multiple Sclerosis is a disease that affects the brain and spinal cord nerves. MS damages the myelin, which is the protein layer that protects and assists the nerve fiber to send electrical signals from the brain to the rest of the body. This disruption can come to cause a large list of symptoms such as fatigue, balance and coordination difficulties, uncontrolled spasms and even loss of vision.

One thing that most caregivers overlook (no matter the condition of their patient) is their own well being. As the National MS Society puts it on their Caregiver guide booklet:

“Realize that for you to take care of yourself is not an act of selfishness. You deserve to be healthy and feel well.”