Navigating Care with Your Siblings

Family2004Every family has some conflict. When my parent’s health started to fail, it took time for my siblings to catch up to me. I was the local one who spent a lot of time with my parents as an adult. I noticed changing behaviors and memory issues. Every attempt to help my parents was poorly received, even when they called me to ask for it. By the time my siblings started to see the issues, I was resigned to silently watch and would respond when the hospital or the police called me. When my siblings started to see how poorly my parents were doing, they had to talk me back into trying.

Together, we set up interventions. All four adult children brought in lunch at my parent’s home and we shared our concerns together. Both times, our parents were polite but rebuffed the suggestion that they should consider any lifestyle changes. During this time, we set up monthly phone calls to touch base on issues. We used a free conference call site called TalkShoe.

When the retirement community threatened to terminate my parents continuing care contract, we moved to weekly calls as we prepared to navigate a very difficult period. We have had disagreements over everything from care choices, the disposal of assets, and even the menu at my dad’s burial. Early on, we set up rules of the road to help us. We agreed that:

  1. Spouses are invited to participate, but only direct descendants vote.
  2. It’s okay to disagree, but not okay to be disagreeable.
  3. Majority rules on any vote unless it impacts any of us financially. If the outcome of the vote impacts us financially, the vote must be unanimous.

With four of us, you would think we would have had issues with voting. If we found the topic got a little too heated, we would table an issue and plan on date and time to reconvene to discuss it.

I had already stepped in and had collected information (using the MemoryBanc Register) on most of their accounts after they signed two contracts for home repairs and one was predatory. I was on the bank account and was monitoring cash flow and bill payments in the background to ensure they were not victims of fraud. We had to prepare and sell their second home, down-size furniture, sell cars, distribute family heirlooms … and figure out how we would manage and share the load because it was too much for one person to bear.

We made up a list and assigned roles. Here is the guide we used to help:

Care Giving Role Duties Responsible
Physical Provide or support activities of daily living (dressing, feeding, bathing etc.) and ensure safety.
Medical Manage the medical needs, doctor visits and medications. Coordinate with various doctors and follow-up on issues and concerns. Healthcare directives, Medical Power of Attorney, Do Not Resuscitate (DNR)
Personal/Financial Manage bill payments and cash flow as well as knowledge of legal documents and locations. Will need Financial Power of Attorney, be on bank accounts.
Investment Understand and manage the investments and other financial assets.
Legal Manage legal review of documents and if different coordinate with Personal/Financial to ensure documents in place and timely.
Historian Collect, organize and archive photos, letters, family keepsakes.
Realtor Lead decisions on property and manage vendor selection and transactions.

We were able to work through a host of issues that could have shattered any family. Luckily, we were able to use this to build stronger bonds. We still schedule regular calls to review finances, mom’s care, and discuss any ongoing issues, but now we are all on the same page and able to focus on doing what is best for our mom.

This breakdown and how we navigated won’t work for every family, but I hope it will give you some idea’s on what might work for yours. Shared. 

It’s YOUR turn to visit!

fingerpointAs the primary family caregiver, I will fess up to thinking and possibly even saying this to my siblings. I know when they visit, I have usually taken the opportunity to escape from the day-to-day and ongoing management of mom. It’s freeing to know that someone else is in town to run down an issue with the nurse or could drive over if something needed to be addressed immediately. I couldn’t even begin to count the amount of times I have visited mom on my own. When my siblings visit, I have used it as an opportunity to take a mini-break from caregiving.

However, what I learned on my sisters visit, was that going with my sibling was a way to reconnect with mom and my sibling. Not only did we have a great visit with mom, we had a great visit with each other.

Thank you to Belledelettres who commented that instead of  “it’s your turn to visit” we should think instead “let’s go and visit together”. Just maybe, they will visit more often. Wondered.

Here come the health complications …

momsleepingontableFor some time, my siblings and I have wondered if my Mom is in the right place. When we had to hire personal assistants for my Mom who is in Assisted Living, we started to look at other communities. We were having to spend about $5,000 a month on top of the monthly Assisted Living fees of $7,500. GULP! We are blessed because my parents saved the money to be able to cover these expenses — but it doesn’t make them seem any less gargantuan. For those of you familiar, this is a Continuing Care Retirement Community (CCRC) and that is a “discounted monthly rate.”

Our goal is to find the right care for my Mom as well as be a good fiduciary representative of her money.

I hired a firm to help us find the right community for my Mom. We have dozens in the metro-DC area to choose from. My siblings have been coming to town to visit the final communities. We decide that one dedicated to dementia care would be the best fit for my Mom. However, during this process, my Mom had some health issues.

I took my Mom to the doctor because the Assisted Living community suggested we follow-up the initial tests from her primary care physician. Her general diagnoses is “Congestive Heart Failure” which is apparently very common in anyone over 80 years of age.

My Mom is sleeping most of the day now and I have to wake her when I arrive to take her to the Cardiologist. A few weeks ago, my Mom started walking very stiffly. As we walk to the car, she lets me hold her hand for support. She doses off in the waiting room and when we reach the examination room, she just wants to lie down and sleep. She actually sleeps through the EKG. I feel a sense of deja vu back to my Dad’s final doctor visits.

The Dr.diagnoses her with Diastolic Heart Failure. There is really nothing to do since she is not complaining of any symptoms or pain. He tells me what to watch for (swelling feet, weight gain). Last time the swelling self-resolved, but if it doesn’t, they can put her on a diuretic to help her eliminate the retained water.

We now have to weigh our decision and hedge our bets that Mom won’t need Skilled Nursing if we move her to the community dedicated to dementia care. Their goal is to have our Mom live the rest of her life in their community, but more complex health care issues may mean that she would need Skilled Nursing at some point moving forward. Just when you think you have a clear path, the choices get muddied. Befuddled. 

A Caregiver’s Repreive

Photo Credit: Cole Bransford

My siblings are wonderful. I know from many of you that I’m lucky to have engaged siblings who will and can help. As we rolled into Christmas, my siblings came to town to visit with my Mom so I could spend time with my husband’s family who would be visiting us.

Initially, I still got a few calls from Mom when she was confused by a call and didn’t know how to reach my brother or sister, but for nearly three days, I did not get one phone call. On the third day — I started to ignore my mobile phone (it was Christmas Day) since my kids and husband were all with me and I knew my Mom was in the company of my sister.  As soon as my sister’s flight left, the calls began.

I believe my Mom calls me when she is lonely, which only reignites concern over her well-being. I’m thankful she is in an Assisted Living facility, but can’t imagine anyone being in one without a family that visits, calls or advocates for their loved one. The fact that she is already in a place prepared to support her and that it is one she choose makes my caregiver duties much lighter, but it does add a level of complication. There are things that happen that we learn of second-hand, can’t control and don’t like.

However, I recognize the toll of my constant concern as the only local family member as well as the guilt that I’m not visiting her daily are taking on me and know that I need to give myself more breaks. I can’t make up for my Mom’s lack of short-term memory by calling more, I can’t feel guilty that I don’t visit more, but I can love her and be mindful of her needs.

One of the best tools I found to manage was using Google Calendar for my family scheduling. When I started to feel overwhelmed by raising my children well, caring for my parents and work, I worked with a life coach. She helped me develop my priority system. I use that to determine what goes on my schedule and review it quarterly to ensure I’m not neglecting key elements of my life. My husband and children all use the calendar to stay in synch. It works well for us.

A change in the routine of life can be eye-opening. Helping my Mom is such a daily part of my life, I didn’t recognize until I stepped away for a few days how much mental time I spent on the topic. It was nice to have the mental break. Recognized. 

Related Articles:

Ten Ways to Deal with Caregiver Stress (AARP)

Respite Care: A Break for the Caregiver (AARP)

Thank you to my siblings — and all of those friends and caring individuals who continue to pay visits and write letters to my Mom.

The Care Giving Roles and Working with Siblings

fourkids (2)The number of tasks involved when you are a care giver will change over time. I am one of four children in my family and the only one that lives near my parents.  Being the only local child means there are some responsibilities that are going to be mine — but my siblings and I have figured out how to share the load.

My parents are in Assisted Living and able to speak for themselves on their likes and dislikes. However, I believe our involvement will only enhance the quality of care they receive. Their acute medical issues will be addressed and I know they are safe. However, I visit at least twice a week to see how my parents are managing and how they are doing.

I previously wrote about my Dad and his flirtation with a wheelchair. Neither parent mentioned it to me when I called, but did to my brother. When I called the Assisted Living unit, they said my Dad was not in a wheelchair. However, when I visited the next day, my Dad was using a wheelchair. I made sure they knew of our interest to keep our Dad on his feet. In some cases, individuals with dementia will forget how to walk, and if that happened, we knew it would mean a new level of care for my Dad, most likely, in the Skilled Nursing unit (and separate from my Mom).

I’m extremely lucky. I have three siblings that are involved and will jump on a plane when I need help, or will make phone calls and manage different aspects of helping manage my parent’s estate and needs.

However, I thought it would be helpful to write-up some of the tasks we have broken out and divvied up between us. Shared. 

Care Giving Role Duties  Name of Sibling
Physical Provide or support activities of daily living (dressing, feeding, bathing etc.) and ensure safety.
Medical Manage the medical needs, doctor visits and medications. Coordinate with various doctors and follow-up on issues and concerns. Healthcare directives, Medical Power of Attorney, Do Not Resuscitate (DNR)
Personal / Financial Manage bill payments and cash flow as well as knowledge of legal documents and locations. Will need Financial Power of Attorney, be on bank accounts.
Investment Understand and manage the investments and other financial assets.
Legal Manage legal review of documents and if different coordinate with Personal / Financial to ensure documents in place and timely.
Historian Collect, organize and archive photos, letters, family keepsakes.
Realtor Lead decisions on property and manage vendor selection and transactions.

Please let me know if I missed any or if you family found another was to manage these tasks.

Finding our Roles as Siblings and Care Givers

thankfulAll four children (and one brave spouse) came to town to help go through the final household items – these were mostly personal or historical documents … the items we just don’t know how to handle. We figured if we did it together, it would be easier to feel confident in our decisions.

What I recognize in looking back on some difficult conversations is that we are all skilled differently and have varied roles to play as we care for our parents.

My role has developed as the primary care manager for my parents. I took the crazy calls, battled with them and witnessed their worst over the past year. The role has changed me. I believe it’s  made me kinder and gentler. However, I realized that I expected my siblings to fill in as I do as a care giver.  That is unfair – I’ve been in training for this role for years and am still learning on the job.

My parents are no longer the people who raised us. We see glimmers of our parents, but they are now both incapable of interacting with us as our parents used too. As they changed, so must we.

We are still finding the balance, but just as I changed to adapt to my parents, I know I need to adapt to understand the changing role of me and my siblings. I know how lucky I am they are all engaged and willing to help. Thankful. 

Making the transition to Assisted Living when your parents refuse – Part II

lessonslearnedAfter my parent’s driving licenses were revoked by a doctor, they continued to drive. Their brains filled in the details with their own manufactured information. At first, my mom admitted they were revoked and showed me the letters, and then later, they would pull out their licenses as proof that they were still valid drivers.  The letter from the state requires that you turn in your license, my parent’s refused.

We had to take their car keys. My brothers came to town and my parent’s initially handed over the car keys. At first they just took the keys and moved the car’s out of my parent’s garage. One was sitting a block away from their home. After my brothers left town, my parent’s found it and hired someone to rekey the car. I’m sure they would have driven more if the electrical system wasn’t toasted in the process.

Eventually, we hid both cars by putting them in storage.

I’m one of their four children, with two older brothers and a sister. We worked well together and thankfully, my brothers came to town to manage the dirty work. When they left, I could still be the go-to for my parents and could tell them I had no idea where the car’s were. My brothers had taken care of the details.

My brothers accomplished this by following what they believed to be the moral choice. What if my parent’s had another accident (they never shared the first one with us)? In the event that my parent’s would reported the “theft” – one brother visited the local police department (we live in a major metropolitan area) to share that our parent’s continued to drive without a license, their diagnosis (and inability to remember) and tell them we had stored their cars.

At first I struggled with having to lie to my parents, however, as things got more bizarre, I came to realize that giving them a modified version of information helped manage us through several transitions and was the best course of action.

After about two weeks, my parents had created their own version of the car’s disappearance and I just feigned ignorance and helped out where I could by giving them rides to the grocery store.

The first two of the three steps that helped us support our parent’s transition were:

  1. Address driving if you think it’s an unsafe activity for your parents and their doctor agrees.
  2. If they continue to drive disable or hide the cars.

If you have been reading my blog, you know this was not an easy process, however, I hope that my experience can help others more easily make this transition with their parents. Learned.

The boys are back in town and the care transition

My brothers arrived to help with some larger projects and just give me a break. It’s always nice to see them and I know my parents love the visit.

A few of the items I shared with my brothers that have worked for me include:

  • Walk in with your game plan ready. I plan my visits to coincide with events at their retirement home so I don’t have to tell them I won’t give them a ride to their town house. When I can’t do that, I have Plan B ready which may mean telling them I’m not able to go in that direction due to another committment.
  • Provide short explanations that can only be interpreted positively. I will share event details in a short concise manner without accusing, denying or assigning fault.
  • Take notes and put details on their calendar(s). When we make plans or my mom requests something, we record it and put it on the bulletin board. I make sure it’s on the calendar in the kitchen as well as the one in my mom’s purse (if she can find it).

Simple right?  For me those things have taken practice since it just wasn’t the relationship I used to have with my parents. It will take time.

We have some major decisions to make in regard to my parents care and safety. They don’t recognize their inability to manage and given their cognitive states, know we need to step in and help them. I’ve been immersed in my parents range of behaviors and it’s interesting to hear new perspectives on my parents well-beling when my sibling visit. They see things with fresh eyes, but more than anything, it’s nice to not feel so alone in pursuing the next steps for my parents. Validated.