Welcome to takingcareofgrandma.com! takingcareofgrandma is my platform for sharing my personal journey in caregiving and practical advice for caregivers.I have been supporting my grandma to age in place as her primary caregiver for about two years now. I have to share what I’ve learned with everyone. I just can’t keep it to myself. I will be sharing my own personal experiences.
Many people are aware that I care for my grandma, but they don’t know about or understand my connection with Calvin. I often call us the ‘Odd Couple,’ because people are always curious about us and how we could possibly be ‘family,’ which is what I normally tell people when they ask what our relationship is.
Photo Credit: Vicki Chaffin
Calvin is 52 years old and he is deaf and blind. He was born deaf due to being born on the tail end of the rubella outbreak that happened in the 1940s, 50s, and 60s. At five years of age, he lost his parents. This loss set him on a trajectory to some of the most unwanted, unloving places (training schools and institutions). Around 15 years old, he lost his vision. Calvin met my friend Michael McCarthy around this time at Woodhaven, a training school in Columbia, MO. Mike took Calvin up to the Helen Keller National Center, where he learned independent living skills, how to communicate, and even had a job (and was featured in the New York Times! When he graduated from Helen Keller, Mike brought him back to KC and helped him buy his house (1997).
I met Calvin supporting him in his home as a direct care professional working my way through college (2007). Mike told me about the agency that supported him, and I went and applied and eventually began working with him. I had to move on from direct support to get a ‘real job’ once I graduated, but I still stayed involved in Calvin’s life. By that point, he was part of my family, coming home with me on holidays and going to church with me on Sundays.
Almost five years ago, when Mike passed away, there was no succession plan, but everyone on Calvin’s support team (I am in fact, his only nonpaid support) agreed that I was the obvious choice to be his next guardian.
For almost five years now, I have been serving in the role of Calvin’s guardian. This past five years I have been very involved in his life and seen him often, but have been very hands off.
A lot has changed since I worked with Calvin over ten years ago. While Calvin used to be able to do a lot of things for himself, Calvin is now pretty much total care, which means he needs support from everything to getting dressed, moving around, eating, and taking medicine.
Calvin has been in the hospital for over a week and we are in the process of setting up hospice for him. In the interim, his residential provider (who provided his care 24/7 before his hospitalization) has decided that they do not have the capacity to meet his needs and will no longer be supporting him when he is discharged.
That means I will be completely responsible for caring for Calvin when he is discharged until I can get supports in place. We have a plan, but it will take a couple of weeks at least to get it all set up. Once it is set up, I will be overseeing his in-home supports like never before.
I will be bringing him home today. I hope you will follow along with us over the coming weeks as we work to get Calvin back settled in his home and I settle into this new role with Calvin. Keep us in your thoughts and prayers and send all the good vibes our way!
God bless you and thank you for being part of our lives.
‘Respite,’ or the opportunity to take breaks from caregiving, whether formal or informal, can be hard to come by for family caregivers.
When I first started taking care of my grandma, my life looked like this:
Barbara’s Not So Integrated Long Term Support Needs
Sure, I managed fine for a few months. But after a while, the fact that my 29-year-old life consisted of nothing but work and Grandma started to take its toll on me. I was getting burnt out.
Before my grandma started having issues, she always went to her Life Group on Friday nights. It dawned on me after sitting down and mapping out our life each week that if I wanted a break from caregiving, getting her involved in activities she used to participate in (to the extent she could participate now) was the key.
When my grandma first got home her first stint at the hospital/rehab (September 2015), she didn’t even feel like going back to church right away. Every single week, I would ask her. (Between you and me, I was personally okay with it, but I felt bad for her because I knew it was very important to her to attend). By the third trip back to the hospital (late January 2015), it seemed that my all purple life had no end in sight.
Fortunately, her last stint in the hospital addressed her final major health need: a gall bladder inflamed to four times the normal size. Once she got home from that hospital stay, she started feeling better and better. Finally, we made it back to church (March 2016). After we’d been back to church a couple of times and she started seeing her friends again, I asked and reminded her about her Life Group. She agreed that she would like to start going again, and she reached out to the leader of the group.
Since that time, she has faithfully attended her Life Group each week (except for instances of personal illness or inclement weather or when they call it off).
Both of us benefit from Grandma going to Life Group. She has something to look forward to each week that is enjoyable with her peers, and I get to enjoy a night ‘off’ from caregiving.
Now our week looks more like this:
Is there something your loved one could participate in on a regular basis that would free you up? How have you been able to take a break from caring? I’d love to hear how you get respite. Leave a comment and share your experience.
Today, I am honored to announce that I am a Certified Caregiving Consultant! The Certified Caregiving Consultant training program offered at Caregiving.com. The program helps family caregivers turn their personal caregiving experiences into a profession. When you participate in the training program, you are able to share your wisdom, lessons learned and resources to help those who care for a family member or friend.
I feel blessed to work at an organization that houses a family resource center, so even before my own caregiving journey began, I was well aware of the issues that families have to deal with when they have a loved one who has a disability or is aging. This training truly helped me put the unique experiences of family caregivers into perspective, learn strategies to use to support family caregivers to solve their own problems, and helped me reflect on my caregiving journey, both what is in the past and what lies ahead.
As a result of participating in this program, I connected with an awesome tribe of fellow family caregivers, from all parts of the country and a wide variety of talents and gifts. In November, I had the opportunity to travel to Chicago to share my personal caregiving journey as a millenial caregiver at Caregiving.com’s Second Annual National Caregiving Conference (that’s me, with my fellow CCC, Deb Hallisey at Advocate for Mom and Dad at the left!). Everyone there was so warm and kind and respectful. When I went to that conference, I felt like like I finally found a group of people who truly understood what I was going through. When I came home, I knew I had to create that here for other people.
My next steps after this program are to start a support group for family caregivers in Kansas City, so people can connect with each other here locally. I have plans of quarterly events, sponsors providing prizes for our valued family caregivers, and awesome resource sharing and connecting happening! I hope to use what I learn in my current professional role and to help me as I move into the next chapter of this adventure. It has truly been a life-changing experience.
A special thanks to my boss, Sheli, for funding this incredible opportunity!
This past week, I had the honor of presenting a webinar on Caregiving.com.
In September, I began the Certified Caregiving Consultant training offered by Caregiving.com. We had a check list of activities to complete before we could become officially certified. My final task to become certified was to host a webinar (or twitter chat or chat on Caregiving.com), so I decided to stick to my day job (haha!) and present a webinar.
I wanted to make my webinar count for something, so I focused on the Integrated Supports Star. Integrated Supports is a principle of Charting the LifeCourse, a framework we have been building at UMKC through collaboration with individuals with developmental disabilities, family members, professionals, and systems change agents across the country over the past 6 years.
Integrated Supports is about tapping into all of your available resources. It’s a strategy we can use to get through our everyday lives or plan for the road ahead. Even though we can use it visually to see where our resources may fall, at the same time, we can use the strategy in our heads to help us think through who or what could help us solve a problem. It has helped me in times of major crisis and also reminded me that I was not completely alone in my caregiving journey.
In this webinar, I shared
how to use the Integrated Supports Star to how to troubleshoot daily life or think through long term plans
examples of how the Star can be used to map current and needed supports beyond government services (which often have eligibility rules)
stories from real life family members and caregivers using the Star to think through how to support their caree or loved one
I hope you find the webinar helpful and can see how the Star might help you as a caregiver.. or maybe just as a person who is trying to ‘adult!’
My grandma’s companion, Karen, is a T-mobile subscriber and a few months ago, she shared the T-Mobile ONE plan with me.
With the T-Mobile ONE plan, for anyone over 55+, you get two lines a for a total of $60 a month (before taxes) with automatic payments. All you have to do is physically go down to the T-Mobile store and sign up.
Recently, due to iOS updates, my grandma’s iPhone screen just completely stopped responding to touch. Not sure what to do, we took it up to T-Mobile, and I used that opportunity to add a line to her plan, so we both could save money on our phone bill.
Now, for the same as what she was paying before, she can pay half, and I am chopping $15 off of my phone bill every month as well. It is a win-win for both parties!
Each month, the Missouri Department of Health and Senior Services (MO DHSS) recognizes a family caregiver who is dedicated to caring for a family member or friend that needs support.
Last week, I received a call from the MO DHSS informing me that I had been nominated for Caregiver of the month. My grandma’s day lady, Karen, very sneakily nominated me. I knew something was up when she asked me to sign a photo release form!
While I was agonizing about what I would say in an interview about my caregiving experience, I realized that this was a chance to do more than just bring attention to my story. It was an opportunity to help other family caregivers realize their own important roles in their carees’ lives and that there is resources and support out there, no matter what your situation. I am truly honored and appreciate the opportunity to bring awareness to family caregiving.
At my grandma’s church, people are constantly walking up to us and asking me if I’m “the Granddaughter.” Every time I hear them say “the granddaughter,” I think of The Godfather and I laugh.
At first, I was kind of irritated at the fact that I didn’t have a name and people were referring to me in this manner. Then, I realized that I have built a reputation for myself like the Godfather. Picture The Godfather in your head. It is an image that evokes fear and reverence. The Godfather is a term of endearment for the boss, it commands respect and affection.
While some aspects of the mob may be seen as less than reputable, I think we can all agree that when we think of the mafia, one of the key terms that comes to mind is family.
True dons and doñas take grief from no man. They do what they have to do for the best of the family. They will go to war over their loved ones. This means exhibiting control and exercising discipline and executing smart social plays.
When I am feeling the heat from other people who don’t understand what we’re going through, I remember I am THE GRANDDAUGHTER, and I recognize myself as the boss and authority in my caregiving journey. I do not sell myself short and recognize my important role in my family and community.
In 2007, the Italian police found what they believed to be the Ten Commandments of the Mafia (link: http://news.bbc.co.uk/2/hi/europe/7086716.stm). Even the mob recognized the value of having a code to live by. I think we can learn a few things from the mob.
So, without further ado, I present to you THE GRANDDAUGHTER’S Commandments.
THE GRANDDAUGHTER’S COMMANDMENTS
THE TEN COMMANDMENTS OF THE MAFIA
1. I will use my social capital to help my family get ahead in life. I will map out and utilize the connections I have with the people in my ‘family’ to help us get what we needs.
I will differentiate between my associates (people who are connected but have not been initiated into the family) and my administration (the close connections you have around my caree’s support) – so I know whom I can call on and when and what kinds of conversations to have with them.
When I need something that my immediately ‘family’ can’t provide, I will to fig who is a ‘friend of mine’ – someone that we are connected to that can help us before picking names out of the yellow pages or relying on publicly funded resources in limited supply.
1. No one can present himself directly to another of our friends. There must be a third person to do it.
2. I will be loyal to my ‘administration’ – that is, those who make my everydays possible.
I will appoint and nurture my relationship with my ‘consigliere’ (the boss’s advisor). I will make sure my consigliere should be a ‘stand-up guy’ (or gal). I will always have their back like they have mine. I will take care of them and ‘vouch for’ them when they need me.
2. Never look at the wives of friends.
3. No one should take any action ‘off the record’ in benefit of or on the behalf of Grandma without consulting with the Granddaughter, even if Grandma begs them not to tell her.
Does anyone do anything in the mob without the Godfather knowing about it? I think not. It is important to always inform the caregiver when you are not ‘made’ (that is closely tied to the family) or you do not have explicit instructions or are unsure of standard protocol.
Those who observe this commandment will be held in high favor by the Doña (AKA The Granddaughter).
3. Never be seen with cops.
4. I will not push myself so hard I need to drink (or rely on unhealthy habits).
I will remember self-care and practice it faithfully.
I will find what I love to do so I’m ready to unwind when the time comes, and I will share in these activities with my caree when appropriate.
I will not feel guilty for taking time for myself. I will repeat out loud: It’s business, it’s not personal.
4. Don’t go to pubs and clubs.
5. I will always put my family first. I will always remember there is nothing more important in life than the people I care about and who care about me.
Family caregiving is a 24/7/365 job. I will always be prepared for the call to provide care and have a plan B when I am engaging in self-care so that I can continue to enjoy myself.
5. Always being available for Cosa Nostra is a duty – even if your wife’s about to give birth.
6. I will always follow through with my word.
If I say I’m going to do something and I don’t do it, I can’t be made when I look like a ‘cafone.’
6. Appointments must absolutely be respected.
7. I will recognize that I might be the don, but my caree is the boss.
Carees must be treated with respect and dignity after a lifetime of experiences.
Some of the loved ones we’re responsible for made our making our measly existences on earth possible. I will give them the honor they deserve.
7. Wives must be treated with respect.
8. I will always be bold and speak my mind. I know best what I need or how to help myself and my caree.
I will never be afraid to ‘hit the mattress’ with a professional over the quality of life of my caree or my needs, but I will always do it in a respectfully. I will pull them aside to ‘take a walk’ and help them understand my point of view or schedule a ‘sit-down’ to squash the ‘beef.’
I will ‘give a pass’ to offenders when they’ve crossed me and we have squashed our beefs.
8. When asked for any information, the answer must be the truth.
9. I will never use my own resources if my caree has their own ‘dough.’
I still have to live, today, and when you are no longer providing care.
9. Money cannot be appropriated if it belongs to others or to other families.
10. I will not open our ‘books’ to ‘Cosa Nostra’ to people whose values don’t align with ours, toxic relationships, and folks who are otherwise barriers to our good lives.
‘empty suits’ (people who don’t carry their weight or contribute) in my administration or among my associates
babbos who don’t listen to me but offer advice
10. People who can’t be part of Cosa Nostra: anyone who has a close relative in the police, anyone with a two-timing relative in the family, anyone who behaves badly and doesn’t hold to moral values.
I thought when we locked up her debit and credit cards and checks and financial information, we would be safe from people getting her money without my knowledge. Was I in for a revelation!
Earlier this year, I was on a mission to find a better way of blocking calls to keep the bull#!@$ off my grandmas phone. One thing I’ve learned about many older people is they will answer the phone. For anyone.
Another thing is, my grandma has dementia. When people have dementia, they lose their ability to make sound decisions and have good judgement, So when the phone rang, my grandma answered it. I was well aware of her deteriorating decision-making ability, and the fact that she had very little to do or think about each day and likely considered these phone calls a welcome distraction from the monotony (let’s not ignore the elephant in the room).
When we first got her phone, one of the first things I did was install the two of the most popular call blockers, Hiya and Mr. Number. But they weren’t doing the job. Between all of the spam call schemes, telemarketers and all of the various mailing lists she’s on, she was getting calls all day.
For months after we got her new phone, despite the call blocker apps, she was constantly getting calls from con artists trying to sell her things, telling her she owed them money, or she had won some contest.
She would often call me at work and tell me about it, and I would assure her it was a scam and to ignore the calls. They’d call her back, and she would answer, even after I advised her just to ignore them. She’d call me back. It often resulted in my blood pressure sky rocketing and my reasoning with her increasing in volume, to the point that one day my co-worker in the neighboring office had to ask if everything was okay. We would then discuss it when I got there in the evening.
Our conversations went something like this:
Me: Grandma, I keep telling you just to ignore the calls if you don’t recognize the area code or the phone number calling you. Why can’t you just ignore the calls?
Grandma: I wasn’t paying attention to the phone number.
Me: Grandma, who would just give you 3.5 million dollars with no strings attached?
Grandma: I don’t know.
Me: Grandma, you have everything you need. What would you even do with 3.5 million dollars?
Grandma:I don’t know.
Me: Grandma, it’s these people’s jobs to prey on older people like you all day. They are professionals.
Grandma: I know, I know. I won’t answer the phone when they call anymore.
I even wrote her a script to refer to when she did answer the phone. To no avail, we went round and round on the scam/spam calls to the point I was wondering if I would have to take her phone away (and stressing out about how she would communicate with the outside world if she needed help).
On a Monday afternoon, most likely staring mindlessly out of my office window, I got a Nest notification that someone had approached my grandma’s front door. I opened up the app, and her neighbor Valerie was talking to her on the couch. I heard her asking Grandma questions about something, including giving out her address.
A few minutes later, Valerie called me to let me know that my grandma had called her to ask Valerie to take her to the bank so that she could withdraw $250 and put it on a green dot card, so the people would send her the winnings. Thankfully, Valerie was wise to what was going on and went over there to talk to her about it and convinced her that it was a scam.
To make matters even worse, it didn’t occur to my grandma to share with me what had happened with the phone call OR about asking Valerie to take her to the bank even though I was the one helping her manage her finances (Aside: Through this experience, I learned that if you are on a joint account with your loved one and have a POA, it is not enough to prevent them from coming up to the bank and withdrawing their money. If this is a concern, you will have to obtain guardianship and provide that to the bank).
When I confronted her about it later, she promised she wouldn’t do anything like that again, but I knew it would be a matter of time before she forgot everything we practiced and discussed and it would happen again.
I turned to Facebook to vent my frustration with the crooks out there trying to take advantage of my grandma. I put my wish out there to the interwebs: I wanted to be able to *completely* block anyone who is not in her contacts and any and all non local numbers. Thanks to the power of social media, one of my friends suggested putting her phone on Do Not Disturb (DND). (Thanks, Colette!)
For those of you (like myself at the time) who are unfamiliar with this feature of today’s smartphones, Do Not Disturb blocks calls from coming into your phone. you can block calls based on
who is calling (favorites, saved contacts),
frequency of calls (robocalls and spam callers redialing over and over), and
time of day (you want to block incoming calls while you are at work, away from your caree).
Six months later, I have one less worry because she’s not getting . Who would have thought a built-in feature of today’s mobile devices would offer so much peace of mind?
Enabling DND is pretty intuitive, but if you need help, use the links below (based on your phone’s operating system) if you need a tutorial on how to set it up.
I have learned that the best strategy for protecting your caree from spam and scam calls like this is a multi-pronged approach.
Turn on Do Not Disturb right away and go through your caree’s contacts to make sure important people can get through (not just the care team, but friends, doctor’s offices, and other key places and people as well. Think: the cleaning lady).
Install the call blocker apps. That way you can report and block scam calls as they come in. It wasn’t enough to use the app to block the spam calls, I also had to manually go into the call log and block the numbers (before I deleted them out of her phone so she couldn’t call them back).
Educate your caree on how to recognize a scam/spam call and practice what to do with them when they get calls like this (monopolize on newspaper articles and reports on TV when they come up as an opportunity to remind your loved one).
Write down a script for them if necessary (“I’m sorry, you’ll have to call back when [INSERT YOUR NAME HERE] is with me, because they handle all of my finances.”). When they tell the caller that someone else is responsible for managing their money, nine times out of ten, they don’t call back.
Have you had something similar happen? What did you do to protect your loved one and maintain your sanity? Drop a line in the comments. I’d love to hear your experience.
It’s a cook-free (and dirty dish-less!) Progressive Party.
On December 18 and 19, Caregiving.com is throwing a Holiday Progressive Blog Party! My friends and I are going to be stopping by the blogs and websites of family caregivers, dropping off holiday well-wishes and good cheer. Our party also includes companies that provides services and/or products to help family caregivers. Won’t you join us?
Be sure to check back at TakingCareofGrandma.com this week. I’m a featured participant at the party, and in honor of the party, I am donating a customized daily organizing sheet to one lucky winner. To help start the New Year off right, a visitor will win a daily organizing sheet, customized to their caree’s needs. This sheet can help carees keep track of their day and help caregivers facilitate conversations about health and wellness, social and leisure activities, and day-to-day affairs. See my grandma’s daily sheet at http://takingcareofgrandma.com/manic-monday-grandmas-daily-organizer/
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