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Elder Advocacy--What it really means

Healthcare in the U.S. is interesting. As a good American, I believe in the free market; however, there are obvious gaps in the system. Insurance is paying for less and less, providers are being inundated with patient overload and there aren't enough nurses or caregivers to staff the system as a whole. Doctors don't have time to spend with their patients and thus, we need to advocate for ourselves and our loved ones who might not have the capacity to do it for themselves. Our healthcare providers can only do so much and we need to help them out.

It's difficult to advocate for your loved one, especially if you don't have a clue what's really going on. If they downplay their symptoms or hide them from you, there's little you can do to encourage good medical attention. It's important to have regular conversations about doctors, medications, symptoms and changes in general.

Pay attention to patterns:

The first step of good advocacy is to understand your loved one's baseline and patterns. A few checkpoints for reference: Start from the morning and go through the day.

  1. Morning

    1. What time do they usually wake up?

    2. What is their morning routine? Do they get dressed or stay in pajamas?

    3. Do they shower or bathe in the morning?

    4. How long do they typically spend in the bathroom in the morning?

    5. Do they drink water, coffee, tea?

    6. Do they like to eat breakfast?

    7. Do they exercise or plan morning activities?

    8. What are their morning medications?

  2. Afternoon

    1. Do they eat lunch? What do they like to eat? What time do they usually eat lunch?

    2. Do they plan afternoon activities?

    3. What are their afternoon medications?

    4. Do they like to take naps in the afternoon?

  3. Evening

    1. Do they eat dinner? What do they like to eat? What time do they usually eat dinner?

    2. Do they plan evening activities?

    3. What is their bedtime routine?

    4. Do they shower or bathe in the evening?

    5. What are their evening medications?

    6. What time do they typically go to sleep?

    7. Do they have difficulty sleeping?

This is a starting point and you can elaborate on any of the daily routines. Many of these things are observational, but you may want to ask a few more personal questions about bathroom habits and obviously any diagnoses and medications. You want a good understanding of the baseline health so you can note and pay attention to any and all changes in routine and medical issues.

As a side note, dehydration can cause falls, confusion and can ultimately lead to urinary tract infections and other undesirable health issues for a senior. I know it feels like a strange conversation to have with your loved one, but it's something to take note of when establishing a baseline and perhaps set up a reminder system or schedule. This is good for anyone, not just the elderly; however, the elderly are often more adversely affected by dehydration and they don't feel thirsty the way they used to, so it's a common problem. I can't tell you how many people I have spoken to that find themselves in an Emergency Department with a dehydrated elderly loved one.

Pay attention to living conditions and hygiene:

It's usually a sign that something is wrong if a person lets things go that they usually wouldn't such as housework and hygiene. This can be your first sign of decline and shouldn't be ignored. Adult children of aging parents will often ignore the glaring signs until it reaches a crisis point before stepping in. As a good advocate, you want to step in before the crisis to help your loved one address any issues that may be arising. Decline in living conditions and hygiene could be due to fatigue, pain and loss of mobility, mental illness or memory loss. All of these are signifiers of something bigger than just aging and a plan of action should be put into place.

Many seniors blow off symptoms because they think that aches and pains and fatigue are just a part of getting older. They aren't wrong, but pain and fatigue can be an indicator and any persistent pain and fatigue, even if it's just arthritis should be observed by a medical professional.

Don't Forget Dental and Vision:

Be sure that your loved one has regular dental and vision appointments scheduled. Dental can often be overlooked for the elderly and it's so important for overall health. Vision often changes as we age and can be an indicator of other health issues. If vision is failing, it is important to keep track of how well your loved one is able to drive and keep a clean and safe home. If vision is failing due to glaucoma or macular degeneration it may be time to consider a lifestyle makeover.

Foot Forward:

Foot health is often an indicator of overall health also, especially if your loved one has diabetes or circulatory issues. If they are unable to bend over to cut their toe nails, a regular visit to a podiatrist is recommended. Podiatrists can often see the signs of underlying issues and bring attention to them.

Say What?

Hearing loss is a common sign of aging but hearing loss can cause memory loss and cognitive decline. It's important to push for an audiology appointment if your loved one is experiencing hearing loss. Sometimes they don't like to wear the hearing aids, and they are expensive, but push the benefits to help them understand the decline that result in not treating the problem.

Don't Forget Dermatology:

Be sure to keep regular dermatology visits. As we age, certain cancers from sun exposure are more common and it's important to catch these early. Be sure to keep an eye on any strange spots or discoloration. Some of the hidden skin cancer areas can be the scalp and top of the ears. Most sun damage that causes cancer later in life was exposed in the first 18 years, so even if your loved one stays out of the sun now, sunblock wasn't a thing in the 50s and 60s and most people enjoyed baking themselves with baby oil when they were young.

Don't Downplay Mental Health:

Mental health is finally becoming more recognized as a necessary part of the health care system for everyone. Depression and anxiety has been on the rise since COVID-19, mainly for younger adults and children. Our aging loved ones come from a generation where they didn't discuss mental health openly and while that's not the case anymore, some are still unwilling to discuss or seek treatment for issues that they may have been masking and silently struggling with for years. If you see changes in your loved one's behavior or patten, be sure to remember mental health as a possible cause and prompt them to seek treatment.

Consider finances:

Neglecting finances can be a sign of decline. Many of our aging loved ones don't want us poking around in their finances. If they are healthy and able, there's no reason to push for a takeover. Usually this occurs if one spouse dies and the other one didn't take care of finances so they ask the children to step in. Be sure to have regular conversations about this topic and definitely ensure that you or a trusted advisor have financial power of attorney in the case that they need you to advocate for them. Many seniors don't like to sign over control and it's important that they trust their advisor and advocate when it comes to their money. Having a financial power of attorney doesn't over-ride their wishes if they are of sound mind. Many people don't realize that and they hold off on naming someone until it's too late. It's also important to remember that just because someone said it once at a dinner party in 1995, it's not legally binding. It's very important to have the ongoing financial discussion every so often and update any coinciding paperwork with a lawyer.

Attend medical appointments:

This one is tough because it's time consuming and constant, and can be a burden, especially if you work or have a family to take care of. A geriatric care manager can help you by attending appointments and advocating for your loved one in your absence. I believe that it is money well spent to have a professional who will do more than just sit with your loved one, but will ask questions and address issues.

Be sure to do additional research on your loved one's diagnosis to help the doctors understand that you know what you're talking about and ask about any and all treatments and side effects. If they blow you off, press them and continue to press them if there is doubt in your mind.

Don't Settle for Sub-Par Care in a Hospital or Skilled Nursing Facility

I spoke with a friend recently who was telling me how she got to know the whole board of directors of the hospital because her mother was not receiving the treatment she thought she deserved. In the end, she was able to get her mother situated. There is a way to go about advocating without flying off the handle. Keep your cool and ask to speak to a superior if you are not receiving the answers you request. I wrote a post about the tactful way to do this

Know that Changes are Normal

While we are ultimately trying to avoid a crisis, know that it's inevitable that something will happen at some point, to all of us. Changes in lifestyle are normal as we age. We naturally slow down to a point and every so often we settle into a new normal. This is all part of life and keeping your mind open about what it means for your loved one to live well.

Know When Hospice is the Best Option

I know this is a hard pill to swallow, but hospice is an underutilized benefit because we don't like to think about death. If your loved one is at a stage of chronic illness where treatments are no longer viable, be the advocate that works to get the best end of life care. Ask the right questions because doctors don't like to give bad news and can often deflect. If they keep pushing painful treatments with not much hope of extension of life, meet with a hospice representative to get a better understanding about what this will offer not just your loved one, but also the whole family. I can't tell you how many people I watched die in fear and pain because their loved ones didn't advocate for hospice services.

The more we understand aging and dying, the better we can be at helping our aging loved ones navigate the journey. This is also an education on how we age and die ourselves. The more we're prepared, the better outcomes for everyone.

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