Essential Resources for Caregivers

Essential Resources For Caregivers

Caregiving can apply to anyone you care for and it can encompass many forms of care. But for all intents and purposes, in this blog post we will focus on caregiving for elderly parents. These are essential resources for caregivers.

Being a caregiver in any form whether that be part-time or full-time can be hard. It is even more difficult if you have a family of your own with children to care for. This is referred to as “the sandwich generation”. Basically, the child (you) are also raising a child of your own while caring for aging parents. Let’s look into some ways that you can take care of yourself and your loved ones.

Hypothetical Thinking

There can be a lot of anxiety around what-ifs. What if I can’t give my mother her medication on this specific day that she needs to take it? What if I miss a visit and something bad happens to her? These are just two examples of how our mind can play tricks on us. These can be valid concerns especially if your loved one has a terminal illness but the burden should not always be on you. Have you ever considered what would happen if you didn’t? If you didn’t help with administering medication or if you didn’t help with this or that. What would happen if you didn’t? As long as you utilize your resources, it will get done even if it is not by you.

Self-Care

It has been said that you cannot pour from an empty cup. If you are stressed out and overwhelmed you will not be performing at your best. In fact, you will be harming your own health and you will not be able to properly show up for others. A caregiver should not get to the point of also needing a caregiver.

A closed mouth does not get fed. You will need to normalize asking for help. If you are familiar with being self-sufficient people may not realize that you are struggling. You will need to communicate and ask for help. This help can come from your immediate or extended family, friends, and your community. You cannot do it all alone nor should you. Your physical and mental health are important and you should prioritize you first. You have to put you first because who is going to save you?

Self-care can take many forms and can include your hobbies. What is it that you enjoy doing? What did you have fun doing before you became a caregiver? Being a caregiver is not your identity. Make time to do what brings you joy and that will also refill your cup. That could be a spa day, taking a long-needed vacation, or even simply doing nothing at home. Self-care does not have to be anything expensive or lavish. Also make sure to take the time to support yourself emotionally which can include meditation or therapy.

Self-care is preventative. The reason why this is so important is because caregiver burnout is real. Caregiver burnout is so real that sometimes caregivers have an increased risk of mortality compared to those they care for, especially with dementia. This is caused by the physical, emotional, and financial strain associated with being a caregiver. Chronic stress, lack of self-care, and social isolation are not healthy for you.

The important thing is to nourish your own mind and body so that you are whole in order to help others. This will also positively impact your patience while being a caregiver.

Setting Boundaries

First, let’s get some clarity on what a boundary is. Boundaries are the limits and rules that you can enforce to protect your physical and emotional health in relationships and various interactions. You can define what behaviors, actions, and interactions are acceptable and unacceptable. 

If we are being honest, children do not sign up to be caregivers. We may do it out of an act of love but it is not something we necessarily sign up for. Sometimes parents even feel entitled to it from their children. Some parents view their children as their retirement plan. With that being said, it is important to set boundaries with your loved ones about tasks you are willing to perform and others that should be outsourced by professional hired help. There are just some tasks that you are untrained to perform.

Sometimes parents can be stubborn and they may want things done a specific way by specific people that they are familiar with. But illness is unpredictable and sometimes you have limited options – but there are still options. Since you do not inherently sign up be a caregiver, parents need to acknowledge that any help that comes from their children is strictly that – help. The time and resources that you contribute to helping is an act of love. This should not be taken for granted. Even if your parents have a preference on how they want their caregiving to go, that still needs to fall within your circumstances and boundaries.

Write down a list of things that need to get done. We will discuss this in more detail later but this may include housekeeping tasks, meal preparation, and delivery. Determine what you are willing to do and what you want to outsource. If your loved ones are able to still manage their own finances, you can share a task list with them stating your assistance in getting specific services setup. If money is no concern (whether from having the assets or qualifying for Medicare/Medicaid) and they do not want to hire anyone, then they will need to deal with the consequences. Resources are available but you are not the entire resource. At best, you are an asset.

You will need to acknowledge when something is beyond your bandwidth and if it begins to blur the lines between being a child and a caregiver. The last thing you want is to harbor resentment towards your parents for no longer feeling like their child but feeling like the help.

Develop A Plan

“A good plan implemented today is better than a perfect plan implemented tomorrow.”

George Patton

Even if you do not know where to begin, start. Starting somewhere will accumulate over time. Having a plan even if you are still trying to figure things out is important. You will need to have a rough draft before having a final draft. These plans can include who will handle the housekeeping, cooking, and medical appointments. Will you hire a housekeeper or will you assist with basic cleaning tasks? Will you assist with grocery shopping and cooking or will you pay for a meal service? Is your loved one able to physically go to doctor appointments or should you engage home healthcare? If you will be on vacation or you simply need a break, can you reach out to your resources for respite care?

There are some nursing homes that offer short-term respite care. This can be subsidized by Medicare (under hospice benefits), VA benefits for veterans, long-term care insurance, Medicaid, and private pay. This will vary based on your location but there are social service resources available such as Pathlights that provide resources for the disabled and the elderly. This can include home delivered meals, respite care financial assistance, and support groups for caregivers.

There are also many meal delivery services available for the elderly. One that I found is Mom’s Meals. This, of course will vary based on your location. They offer meal services with dietary restrictions in mind. This includes diabetic friendly, gluten-free, heart healthy, low sodium, pureed, and vegetarian meals.

You can cater these resources and solutions to your personal circumstances.

Break The Pattern

It is a known fact that most caregivers are women. In fact, caregiving is disproportionately provided by women. Between 57% to 81% of all caregivers of the elderly are women. There may be some biological factors and societal expectations that influence this but this cycle needs to be broken. Anyone, regardless of gender can be a caregiver and this role should not primarily fall on the women in the family. This is especially true if there are multiple siblings in the family.

Employment Resources

There are a few resources for caregivers available for those who are employed. This can help you to avoid burnout and prioritize caring for your loved ones. This is time you will never be able to get back.

The family and medical leave act also known as FMLA entitles you to unpaid but job-protected leave to care for a family member. It covers 12 weeks of leave to care for an immediate family member such as a spouse, child, or parent who has a serious health condition. FMLA can also apply to you taking a leave of absence if needed for your own health conditions which includes mental health.

Some employers also offer bereavement leave. If this is available, take it. Work can be an easy distraction to resort to but you will still inevitably need to process it in your own time. Find other sources and outlets to cope with your grief so that you are not burning yourself out and making mistakes at work because of it.

Department of Aging

Resources are available to you and your loved ones with a focus on aging. You can check out your local department of aging as the resources and information will vary based on your location. There is also the department of health and human services. This website provides caregiver resources, social security benefits, Medicare enrollment, Medicaid coverage, retirement planning, and more.

Specialized Resources – Dementia

I went to Amsterdam recently and had the opportunity to visit the Body Worlds museum. There was a dedicated section about Alzheimer’s. It was described as “the long goodbye”. To those who are caring for someone with dementia, this is a very sad but true fact. It is basically like grieving someone who is still alive and watching them deteriorate more and more each day. But it is important to cherish the memories you have with your loved one while they are still here and try not to think about the future. Let your good memories influence your care for them. Try not to mourn them yet. Being present can prevent you from falling into this spiral about things that you have no control over.

Many people with Alzheimer’s can still utilize their long-term memories. If your loved one liked music or dancing then oftentimes they can remember their favorite dances or their favorite music. Music is known to strike emotions and the feeling associated with a song can be linked to a strong emotional connection.

There are resources available for your loved ones with dementia. Some public libraries have calendar events that have a focus on those with cognitive impairment and also additional resources for caregivers. Of course, there is the Alzheimer’s Association that has many resources available to educate you on the different types of dementia as well as help you with next steps. There is also the official website with resources for caregivers of people with dementia. These resources provide information about short-term and long-term memory care available at your disposal.

Although Alzheimer’s is the long goodbye, it does not mean goodbye now. In our final topic we will discuss how you can show your final act of love while you still can.

Final Act of Love

Do not let the last time you check up on your loved ones be at their funeral. Be present now. Show up for those that you love, even if you cannot be a caregiver.

If you are a caregiver, let go of the guilt of not doing enough. From one caregiver to another, you are doing the best that you can with your circumstances and that is good enough. Your efforts do not go unnoticed and I am sure your loved ones would tell you that they appreciate you if they could. There are many ways to show your final act of love and that can even include spending time together. This is time that you will never get back. All of the good memories you have accumulated over the years will last a lifetime. Grief, although difficult is indeed the price we pay for love. Let that love count and make it matter.