Have you heard of The CARE Act (Caregiver Advise, Record, Enable Act)?

CAREAARPI attended a caregiving support group at my Mom’s retirement community. One of the members was sharing the horror story about the release of her husband from the hospital. I immediately relived the story of my Dad’s hip surgery and the doctor’s discharge plans.

After breaking his hip on the racquetball court, the doctors were going to release my Dad into the care of my Mom. My Dad had surgery and was in the hospital for 4 days. He was in terrible pain and was unable to get himself to the bathroom unattended. At this time, my Dad was around 200 pounds and my Mom was around 105 pounds. My Dad insisted they release him so he could get back to their 3-level town home. As I sat with my Mom listening to the discharge instructions, I stopped the doctor and told him there was no way my Mom was going to be able to care for Dad. Thankfully, my parents were in a Continuing Care Retirement Community, and they had the ability for my Dad to be cared for in skilled nursing while he rehabilitated.

I thought it was derelict for the doctor to release my Dad into the care of my Mom given his needs. At the time, my Mom was initially unwilling to admit she couldn’t care for my Dad. However, at a glance, it seemed very obvious that my Mom would be unable to help my Dad get out of bed and to the bathroom and ridiculous that he would be able to climb two sets of stairs so soon after his surgery.

While my Dad was angry and hated being in skilled nursing, he needed to be able to get himself to the restroom at minimum. Then he was able to finish his recuperation in their one-level apartment.

I’m not sure the new act if implemented will help, but I’m glad to see some light brought to this topic many of us have already faced. Finally, Some Help For Family Caregivers After Hospital Discharges Interested. 


Additional Related Stories:

Support Seniors and their Family Caregivers AARP

Thank you Gov. Fallin, Legislature for Support Marjorie Lyons


Better Conversations with a Parent who has Dementia / Alzheimer’s

conversationdemWhen people first meet me, they would describe me somewhere between quiet and aloof. I’m not sure if this is just part of my personality profile or became part of me because we moved around so much when I was younger that I learned my best friends developed with time. I have found in the work setting, listening to the discussion and saving up my voice until the end served me well.I share this because this blog and the ease at with which I share what’s happening in my life is very different from the woman you would meet in person.

However, I’m realizing that in general, I am very talkative and approachable on the subject of caring for a parent with dementia. More people know this about me than even the names of my husband and children. It is never I topic I start but I’ve found I’ve been in so many casual conversations that some aspect of caregiving or dementia is mentioned that I quickly find a common bond that seems to be broader than personal interest, husband or child topics.

Recently, I found this bond with a woman at Church. Her experience in caring for her mother-in-law sparked a fire and she recently jumped career tracks and is now going to be working in a local community to improve their services for their residents.The experience of caring for a parent is changing many of us in positive ways.

She sent me this article and I thought it included some great general tips on how to be a better communicator. I included the list as well as added some of the things I have learned in the past year. They include:

#1: Make it a priority to engage in “time-limit-free” conversations.  I found arriving with an agenda can turn your visit sideways. It’s more important to visit in the moment. Your calm translates to their calm, your angst translates to their angst.

#2: Use shorter sentences, and don’t ask more than one question at a time. Avoid asking questions about what they just ate or did. Since short-term memory goes first, this can create some discomfort when they are unable to recall the information. My mom would come up with logical answers, but had no relationship to factual information. 

#3: Talking is overrated. I like to bring pictures and share my memory behind the photograph. My parents were never huggers or hand-holders, but as often as I can I work in a hug, a kiss or a hand-hold. One of the most memorable moments I spent with my Dad was holding his hand last September, two weeks before he died.

#4: Try alternative means of communicating. I write my Mom notes as well as spend time just sitting with her around a puzzle. Doing puzzles are a great way to connect over a shared purpose and exchange smiles and winks when we find the right piece.

#5: Make as many connections as possible, both with your words and your body language. In general, I will avoid looking at my phone or email and just will sit quietly if my Mom and I are not doing something together. My goal is to give her my undivided attention when I visit.

#6: Be calm, and remember the past. I learned early on that my Mom would mimic my emotions. I work to redirect the conversation if we are moving into a direction that gets her angry. Quickly shake it off and consider bringing up a fun memory from your past to share.

#7: Don’t take it personally. So easy to understand, but so difficult to do.

This one poem always gives me some perspective when I’m overwhelmed, frustrated, angry and sad. It’s a reminder to be kinder and gentler.

I hope some of these tips help you on your journey. Experienced.

Some additional stories related to this topic include:

Manage a Visit with Someone Who Has Dementia
I provided a list of “Do’s” and “Don’ts” to help those just getting exposed to someone with moderate dementia. Some of these take time. Trying to connect and being present is more important than executing these perfectly. 

Three Go-to Tactics for Dementia Caregivers
These have served me well over the years.


When They Believe, So Do You: Dementia and the Truth

locked  doorMy Mom is now sundowning and paranoid. The doctor has recommended new medications and the staff has asked that we hire additional support who can help redirect her from 1 to 9 PM daily. It seems odd that she would need additional support given she is in Assisted Living, but she is a very mobile and moving into more behavior that is resulting in concerns for her dignity when she wanders into the Independent Living community where she lived for more than a decade. She is getting very confrontational and Independent Living isn’t staffed to help her.

The doctor has adjusted her medication and we just hired a personal assistant who has been told to lurk in the hallways and be as invisible as possible. As I’m leaving a late night tennis match, my Mom calls to tell me that they are trying to move her out of her apartment.  She tells me she will “barricade the door” until I arrive in the morning. I tell her I’m coming over now. She is relieved.

When I arrive, I stop by the nursing station and they tell me they saw my Mom walking to the Independent Living dining hall, but had nothing to report. I ask if they had seen anything to give my Mom the impression she was being moved from her apartment. As soon as I ask, I realize how silly my question sounds. They smile and tell me “No.” My Mom was very convincing on the phone — I know she believes what she tells me which is heartbreaking. I imagine how frightened and alone she must feel.

When I get to my Mom’s apartment, she is wound up and happy to see me, but doesn’t mention someone trying to move her out and there is no evidence to support what she told me when we spoke 25 minutes ago. She doesn’t even remember calling me. However, tonight she is frantically moving around the apartment. I suggest we find her pajama’s so she can get ready for bed and I can go home. We spend almost 40 minutes looking for her pajama top. It’s a two-room apartment, but my Mom continually embarks on a different task and I try to settle and redirect her which makes the search so lengthy.

I step out and request something to help my Mom settle down. They give me a dose of Ativan and I set the pill container on the kitchen counter. When my Mom sees the pill, she quickly picks it up and takes it — I didn’t need to prompt her. We never do find her PJ top and after 2 hours, I realize my Mom is not going to go to bed or change into her pajamas as long as I’m “visiting.” When she starts to yawn and slow down after the Ativan starts to calm her, I kiss her good-night.

I recognized years ago that my Mom believed what she was telling me. Usually it was that she was paying the bills or ate breakfast — things I knew not to be true because I was doing them or had been with her all morning and she refused breakfast. It’s harder to know the truth when you aren’t with her, my Mom can still be very convincing.

The hardest part is that I know she believes what she tells me. My Mom is all alone and I wonder how to help her be more at peace. Challenged.

Your Mom is not doing well in the Assisted Living Community

sunriseThe death of my father impacted my Mom cognitively. For years they were a team that managed their dementia by being together. Now my Mom’s alone with no wing man.

Her decline is escalating and unfortunately, she’s getting more combative. I’ve noticed this on my visits as we interact with others in the community — at least she is usually kind to me. However, she now believes someone stole a card set she used to run bridge games and this is causing grief for everyone. She has always tended to perseverate on specific topics and this month, it’s the bridge card set. My mom turned over the set to a woman to run the games but doesn’t remember and/or doesn’t like it on any given day.

I was called by the head of the community and they asked to have a meeting with me. They took me through a litany of events and issues and are worried that they are going to be unable to care for my Mom. She is refusing to take the prescribed medication, which includes a change to give her Lorazepam daily. Before, it was used as needed to reset her anxiety, but her behavior now has moved the recommendation to a daily dose.  

I ask for suggestions, my Mom can’t be the first resident they have faced they have trouble helping. The head of Assisted Living has decades of experience as well as do the collective experience of the other staffers at the meeting. They share the varied things they have done to try and help my Mom that have failed — many that worked for others. They have even tried a variety of new things given my Mom’s interests and mobility. The psychologist and the head of the dementia care unit have spent time with my Mom over the past few weeks and felt that unless she started taking the mood medication (Lorazepam), the community would be unable to help my Mom. The biggest difference with my Mom is her mobility.

If we can’t reset my Mom’s anxiety, and her behavior, they will put her on a 30-day discharge plan.

So here we are and the first step is getting my Mom to take her medication. I ask if they can just give her the 1 pill. It’s very small, she could easily take it and then they could reintroduce the vitamins and other medication that they believe are “essential.”  My Mom has never liked taking pills and resents that the staff watch over her while she is presented with 7 pills in the morning. Most of them are vitamins. I requested that they minimize the number of pills my Mom was taking several months ago, but the doctor felt strongly we should not make a change. She recently just refused to take any pills.

As my Mom continues to decline, it’s still surprising how many things she can do. However, her disease is moving her into a very negative place and we are struggling with how to best help her manage within her community. Just when you think you have a handle on the situation, it shifts and challenges you in new ways. Confronted. 

Please share your experience – positive or negative with different medications or a similar behavior.

A Belated Love Note to Professional Care Givers

heartsAs I was cleaning out some old boxes of papers, I found a booklet on “Managing Alzheimer’s” that was given to my parent’s in 2010. We didn’t know of my father’s diagnosis until a neurologist and psychologist both reported their findings to us in 2012.

In 2010, my siblings and I all noticed a change in my Dad’s normal jovial behavior. He was solemn and talked very little. My brother and sister took him to his primary care provider who referred a local visiting medical service. A nurse visited him in his home every week for six weeks. She called me to say he and my Mom seemed to be doing alright, but told me she left some papers that might help.  I remember my Mom commenting on her visits – my parents had no idea why she was visiting them in their home. I’m sure I ended up with the booklet when my Mom was complaining about her last visit.

My Dad’s primary care doctor never alluded to any suspicion of Alzheimer’s — and I visited her with him at least twice after this referral. Looking back, I realize how many signs we had been given. It wouldn’t have changed the journey because my parent’s never acknowledged any issues and we worked to manage through while maintaining their dignity and independence.

Yesterday, as I was going through the mail to pay bills, I found a card from the Alzheimer’s Association that said my Dad had been donating since 2011. My parents habit was to review the charities each January and make one annual donation. In January, 2011, they added the Alzheimer’s Association to their list. My Dad never discussed any medical issues with any of us kids. We inserted ourselves into his care.  The only time he pushed back was when the psychologist was going to deliver the results of his neurological testing. He knew he did poorly, he told me so.

He only once mentioned the word Alzheimer’s to me, it was in the final month of his life. As we were in the waiting room to see the first oral surgeon about the lesion on his tongue — he pointed to an advertisement in the magazine and asked me if I knew anyone with Alzheimer’s.

I reflect back on the woman who visited my parents and who left these papers. She already knew and helped provide us with information using kid-gloves. It was all that would have been accepted. Professional Care Givers are a rare breed with skills that continue to elude me. My hope is that we all remember to thank them as often as we can. Reflected & Appreciated. 

The Representative Payee Process with SSA

sscardIn May, I visited the Social Security Administration (SSA) and applied to be the “representative payee” for my parents. I was gleeful with the ease and simplicity of the process.  I met with staff, made some sworn statements, signed a paper confirming my relationship and duties as well as supplied my Durable Power of Attorney. I was told I should get all the information in the mail in 4 – 6 weeks.

When nothing arrived, I called several times but kept getting routed to the call center and no one there could assist me. While I had the contact name of the woman I met, the number she provided rolls over to the call center and I was never able to reach her after my initial visit.

In August, three months after my visit, I received a letter telling me my Dad’s check was withheld due to an address problem. The letter allowed me to follow-up with a specific contact and in trying to resolve this, I ask is they can find out what happened to my Mom’s papers. I am told they can’t speak to me because her paperwork never got processed. But I did them both on the same day and with the same woman. How can this be?

The nice man on the other end of the phone from the Social Security Administration (SSA) tells me that at this point, I need to get back into the office to clean up the issues. When I ask to schedule an appointment, which was so easy the first time, I’m told that the first available appointment is two months away. He is sympathetic and explains that the local offices have been given additional responsibilities and they are really busy these days. I hang up thinking I need to find a day to spend back at Social Security.

That afternoon someone from SSA called and wants to talk with me. She asks me a few questions and says they are going to try to clear this issue up without me having to go into the local office. I’m pleasantly surprised. Within a few weeks, I receive my Mom’s paperwork and my Dad’s account is updated.

Kudos to the SSA staff — once I got the letter and followed up to the assigned contact — he listened to me and worked to resolve this for me.

However, the process took over four months from beginning to end and I had to manage the checking account and bill payments without this money for two of those months because my Dad’s payments were frozen.

Two months later, my father passed away. and to process the transition of his military retirement pay, I need a copy of my Mom’s social security card. We have searched high and low, and there is not one to be found. Looks like I’m headed back to the Social Security office. Warned.


– Ask for an appointment to avoid REALLY long lines at the local office

– Show up with Social Security Numbers, a valid driver’s license ( or other accepted photo ID) and your Durable Power of Attorney

– Expect this process will take several months

– Be prepared to manage without pay if something goes wrong during the processing

– Request that they send you a Social Security card (don’t know if they will, but recommend you ask)

The Roller-Coaster of Hope and Anguish

rollercoasterfearFor a few days, we felt hope that we could get my Dad comfortable. We could at least give him some more time to enjoy eating, drinking and talking.

We quickly realize that the road to get my Dad to Radiation is too long and difficult for him to travel. We knew the feeding tube option was horrible, but had hope he might have another good year or two with my Mom.

My first thought when my Dad’s speech was funny was that he was having the swallowing issues seen with Alzheimer’s – but it seemed really early for that to be happening.

We recognize that putting my Dad through general anesthesia, possibly twice, then 7 –weeks of Radiation, will not only be incredibly painful, but will also further accelerate his symptoms.  Might we possibly cure my Dad of cancer to move him into the Dementia Ward?

My brother and I discuss the reality and decide that we are on the wrong path. We request that the Assisted Living facility refer my Dad for Hospice palliative services. Nauseated. 

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.

Can we order one of your books?

MemoryBanc RegisterOn the past few visits with my parents I have taken phone calls that were orders for the MemoryBanc Register. My mom let’s out a “hot dang!” then asks “can we order one of your books?”

My brain reels. Try as I might, I’m the kind of gal who has the witty response a day after it would have been useful. My defense for this has been to stick with the truth. So I tell my mom I already have a book for them.

Recently, my mom has been appreciative of the help and telling me now how much she is struggling to put information together. I have never shared with them they have been the inspiration for my business. She has no idea how many MONTHS I spent trying to find all the information on their accounts. She doesn’t know how frustrating it’s been to try and help them. My parent’s do not understand how many things they were failing to manage (bills, household maintenance) and many simple fixes their Power-of-Attorney could have fixed were derailed.

The blessing of the Internet has been that I could set-up online access to act on my parent’s behalf. I had enough personal information and knew what their PINs would be. It’s been over two years since she called me to ask how to put money in the bank. Just last week we uncovered another bank account and a life insurance policy. It’s no wonder that the Washington Post reported that there is over $32 billion dollars of unclaimed funds are sitting in state treasuries just waiting to be claimed.

It’s time to put the book in front of my parents (or a summary at least) so they can see, touch and feel more connected to their own estate. Documented.

Can we see your daughter alone?

hourglassAfter the Doctor visits with my dad, he comes out and asks if he can speak with me alone. My parents nod yes and I walk back to his office with the Social Worker.

The doctor shares that he’s concerned about getting us guardianship. The Social Worker reports that we hold a Durable Power of Attorney, and given that my mom seems to open to moving my dad into assisted living, she does not think we need to pursue that route.

I’m floating between giddy and nauseous. I’m encouraged that my mom actually suggested we move my dad into assisted living, but sick that we are on the precipice of this action.

I know that the change in the environment could easily progress my dad’s cognitive state.

Sadly, I know my mom won’t remember this conversation and it will take time and effort to help them navigate in the direction of assisted living.

This is the second time in a month where I’ve gone to a meeting with my parents and they are asked if the they approve that I meet with the person in private. When I come out of the meetings, they don’t ask what we discussed.

The Social Worker mentions that it just takes time. We all needed some time to adjust. I know I have changed and with a little time, so did my parents ability to accept and trust my support. Aged.