A lady that I spoke with last week told me a story that fits the typical profile. She and her siblings all worked and had a family of their own. Two of the siblings lived and worked out of state. All of the kids had their plate very full. The local child had done everything possible to help supplement care for Mom and Dad every available spare minute. Dad had Alzheimer’s and required a lot of care. Mom was sharp cognitively, but her physical health was failing. Both Mom and Daughter had a common goal – to keep Mom and Dad at home and out of the Nursing Home. So far, both of them managed to hold things together, but it took a LOT of work. The work was exhausting for Mom and Daughter.
Family Caregiver Guilt With The Nursing Home Option
It seemed that when she was not working or sleeping, Daughter was at Mom and Dad’s house. She knew that Mom and / or Dad may some day wind up in the Nursing Home, but she was doing everything within her power to honor their wish to remain home. Daughter felt very guilty about ignoring her husband and kids but loved her Mom and Dad and felt she owed it to them to do everything possible to help keep them at home.
Even though this plan was taking an emotional toll on Daughter and a physical toll on Mom, it worked for a long time. Then one day the unexpected happened – Mom fell and broke her hip. That day Mom and Dad’s Journey at home was over. Everything shifted from Mom & Dad being able to live at home, to Mom and Dad having to live in a Nursing Home. On that day, Daughter’s role also shifted from Family Caregiver to Advocate.
When the “Well” Spouse Declines, the Home Journey is Over
This is a typical journey. In the above scenario, Mom has assumed the responsibility of primary caregiver of Dad for too long. Her health was not the best and was declining. Despite her age and health, she was trying to provide care for her husband at home while managing her own care. Daughter was doing everything possible to supplement the care with every spare minute she had. When Mom broke her hip, everything suddenly changed. She was in the hospital for a week then transition to the nursing home for Rehab. That same week, Dad was also admitted to the nursing home.
This is a typical scenario. When something happens to one of the spouses, then Mom and Dad’s Home Journey sometimes collapses like a house of cards.
What Does YOUR Family Scenario Look Like?
Your family scenario may be different. Maybe your Mom and Dad’s health has declined to the point where it can no longer be properly managed at home. Or perhaps they have dementia that has progressed to the point where they need 24-hour supervision. If you are the sole caregiver, it is impossible for you to stay awake and alert 24 hours a day. If this is the case, just know that your role as a caregiver is not over, it just shifts to another role – that of ADVOCATE.
Your Role as Family Caregiver can Suddenly Shift to Advocate
An effective Advocate attends care plan meetings at the nursing home on behalf of their loved one and makes sure that the plan for Mom or Dad is properly implemented. They ask questions and follow up on caregiving.
Many people mistakenly think when Mom or Dad transition to a Nursing Home, their job is over. They think the only thing left for them to do is to occasionally visit Mom or Dad in the Nursing Home.
While technically your job as a Family Caregiver is over, your job as Advocate is just starting. The role of Advocate carries a lot of responsibility and you still have several things that you need to do to make sure your loved one gets proper care.
You have been with your loved one more than anyone, and more than anyone else, you understand their needs. Being an effective Advocate is very important. Your Loved One can no longer speak up for themselves. Now it is up to you. Let your voice be heard.
We want to be friends!
Ok. That might come off a little fast, but you can trust us. We want to help! We fully understand the stress and turmoil that you are facing as Family Caregiver – including personal experiences with burnout.
In our time as caregivers, we have amassed a wealth of knowledge that we desire to pass on. We understand the emotions involved while making necessary decisions. Likewise, we have met many professional caregivers, as well as other family members who were thrust as Family Caregiver. All caregivers have shared the same advice – Join a community! There is nothing more cleansing for our situation than knowing that we are not alone!
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Being an Adult Kid who is helping mom as she is declining can be a scary, frustrating and lonely place lacking stability. You feel like you are solely responsible for solving Mom’s problems while managing yours. Some occasional input and a community you can trust would help, especially when facing burnout! This is a way that all of us can be working together as caregivers!
Many others that you may personally know are having to figure it all out by themselves. Most of them have no community. Please take a minute and do them a favor. Copy this link ~> help.mom/cc <~ and send it to them in an email or private message. They can click on it and subscribe to our newsletter for free.
Then they can enjoy weekly tips and encouragement. They no longer have to feel so alone in their family caregiver journey. They will appreciate the favor! Thank you for thinking of them!
Thank You for being a Caregiver for Your Loved One – you are making a huge difference in their life!
Hello my name is jennifer, as much as the super daughter role sounds lovely, what happens in this scenario daughter who lives 25 miles from mom in nursing home, but doesnt give a hoot on her care plan visits 2x a month, and other daughter who would be involved lives 4500 miles from mom and cannot visit mom because she doesnt work has major depression to travel alone, cannot leave her husband unless she to wants to be homeless since she cant work, but mom now id being neglected like dad was who died recently of multiple infections, and 50 pds because daughter number one didnt care, who now looks at mom, any advice??
Sorry for the late response. Just now saw this comment. That is a tough situation. We are definitely trying to address the issues of remote caregivers in upcoming information and products we offer.
To your specific scenario I would definitely look in to getting some sort of local advocate help. Whether it’s a non-medical care provider or some other form of visitation/reporting that can be done by a person or company. There are independent professional caregivers as well as companies that offer these types of services. At the very least daughter number 2 could ensure that mom is not being neglected. She would probably need to run this by sister 1. Of course, paying for such a service is another discussion.
You didn’t mention this but it needs to be said, a big problem with the scenario you listed would be “who has power of attorney and other legal documents?” Is it the daughter who’s close or the far away daughter. If none exists, can mom sign documents (does she have the mental/legal capacity)? Will daughter 1 cause problems if daughter 2 tries to step in and help?
We’ve seen multiple times where the child not helping all of a sudden starts making everything difficult when someone else tries to take charge/help. If there are no legal documents or they are in the hands of the wrong person it would benefit daughter 2 to seek legal help from an elder law attorney.
Hope that helps and good luck.