Tomorrow Millie would have been ninety-one. The moment I see the word “August” I begun to think of her, feel her, smell faint wafts of White Linen perfume every where I go. I am aware of things that she would find amusing – how often I reheat my coffee and then never get around to drinking that 2nd cup, how someone on tv pronounces the word “Alabama”.
There was a shift in my backbone this year. For a while I was not able to stand up tall when talking about the time I took care of Millie. I felt defeated, beat down by the disease of Alzheimer’s. Now I find that I talk about it often. All the time. What would you like to know? How can I help you? What did you wish you knew?
It is shocking for me when I meet new people and they do not know this giant part of my identity. I am not a caregiver for someone who is still alive, but being someone’s caregiver is something that sticks with you. When your loved one has moved on your focus shifts to others in need. That woman in the cafe – does she need help opening the door? Does she need help understanding which line to go to? Does she need anything?
I decided to get more involved with conversations about elder care this year. I participate in chats on twitter, respond to friends looking for advice for someone they work with, I pay attention to medical news. I know that much attention is given to our parent’s generation as so much will fall on them to responsibly take care of their own parents or spouse’s parents. There is not a lot out there for people my age – for the granddaughters and grandsons suddenly in the world of dementia and memory prompts.
I grew up going to nursing homes weekly. I went with Millie or with my Mother and it was just as routine as going to the grocery store. I find the men and women of my Grandmother’s generation easy to talk to, but I always have. I recognize that this is not the norm for many. Usually when someone in their 30′s suddenly finds themselves faced with being a caregiver to a Grandparent it is a total shocker.
If you are in this place right now, or about to be, I have some advice for you. I also want to tell you something and I want you to really absorb this: this time will be the best and the worst you have ever known. You will find yourself in situations and conversations where there is zero logic and all you can do is breathe and know that the moment will ebb. It will. I promise.
You will also be told, “Wow! I could never imagine taking care of my grandparent!” You will be told this a lot. A year ago you would have said this to yourself. Soon you will find yourself responding, “I can’t imagine NOT taking care of my grandparent.”
Five Easy Ways to Ease Into Being a Caregiver to a Grandparent
1. Routine is important. Very important. THEIR routine. Take 72 hours and observe what tasks need to be done each day (from the mundane like bathing and eating to correspondence and errands) then create a schedule that happens every day.
2. The Car. Regardless of your loved one’s current abilities at some point the car conversation is going to happen. Do both of you a favor and get it out of the way as soon as possible. Many geriatric doctors have, at the request of a concerned family, been known to write prescriptions indicating that the patient is no longer allowed to drive. I could write in much, much, much more detail about this for anyone that needs it.
3. Be three steps ahead. If your loved one has a hard time deciding what to wear eliminate that anxiety by placing out clothes that you know she will like. Slowly introduce clothes that are easier to get in and out of with one hand (down the road your loved one will be steadying themselves on you or a chair to dress). Choices in general can cause panic – if you know your Grandparent drinks 1/2 a cup of black coffee every morning don’t ask them what they want to drink. Just give them their coffee.
4. Photo albums will save you both. Now. Seriously. RIGHT NOW. Put together several family photo albums. These do not need to be intricate or arty. The simpler the better. Consider having an album for different eras of your loved one’s life. The college years, early marriage years, young children…label every person in large and easy to read font. Label locations. These albums will become your tools to bring your grandparent back to you.
5. The History Channel has your back. Invest in cable and a DVR and get to recording shows. You know what your grandparent is interested in best – there will absolutely be specials on it. Be prepared to watch these shows a million times. Stay away from the news if it has been a hard day. Trust me.
I could write for days about this. I really could. And I want to. And I will. But today I wanted to put these ideas out into the world in case someone out there needed to hear them. You are not alone.
{ 19 comments… read them below or add one }
Let me add to your photo album suggestion. Get a digital picture frame, and two SD cards. Keep one with you, and keep one in the frame. On the card, load old pictures, not new ones, of your loved one’s family. The pictures are a comfort and will trigger memories. If you find more pictures to share, load them on the card you have, and swap them out when you can. Then you can load the old one and have it ready when needed. My great aunt has the recent photos next to her, but she can lay her head down and see her family from long ago, and they comfort her while she goes to sleep.
That is a great idea. With Millie we had to have something physical that she could touch, turn, caress even. I ended up having many different versions of albums for whatever mood she was in (or to help her get out of a dark moment).
This is a really great one! I’m glad you wrote it!
I’ve worked in nursing homes, and in private in-home care situations off and on for the last 15 yeasrs+ (currently providing in-home care for “L” who has Alzheimer’s) your tips are so right on the money! I’m not sure if it helps, but we have a white board in L’s room with the date, location (you’re at your sons house in california), and even the season/weather.
Here are a few tips and tricks I’ve picked up along the way:
Working in this field, the first and #1 tip everyone gave me was to not become attached, and NEVER bring my work home with me. #2 is not to take anything they say or do personally. (Bad moods tend to be exacerbated, mean/hurtful things can be said for very minute reasons)
While I am probably more able to let stuff roll of my back (I can only imagine to be quite difficult for a relative) I’ve never found the ability to remain “un-attached” so to speak. Therefore my emotions take over, and tend to follow me home. To be perfectly honest, I can’t imagine ever being able to detach, or ever wanting to for that matter. It can definitely be both a blessing and a curse. Patients tend to warm up to me easier, and are generally kinder. They tend to see me as a person with feelings, as opposed to an orderly. However, my heart breaks for them constantly and I worry about them when I’m not at work. I just can’t imagine having someone taking care of MY mom, or MY grandmother, who wasn’t emotionally invested. The thought frightens me. (Would they be cold to her? Would she be comfortable in their care? Would she be more frightened because they are around? Etc.)
2) One thing I’ve found to help things go a little smoother- is not “correcting” them. (For example- if she thinks she’s in new york, instead of california, and being told she’s in california will upset her, I just go along with it). I don’t know if this is the correct way to handle things. I don’t know if it helps or hinders. Honestly I don’t know what I’m supposed to do in this situation. What I do know, is that for some reason reminding L that she’s losing her memory only upsets her. It throws her whole day off kilter. It seems to be the first domino in a row of difficult daily tasks.
Do you have any advice on these subjects?
Thank you so much for your thoughtful comments.
I would never dream of letting someone take care of a loved one that wasn’t emotionally invested. Your compassion is a blessing to those that you care for and their families. Even someone at the final stages of dementia or Alzheimer’s can tell if someone is there that does not care and they will recoil. I saw it many times in hospitals.
As far as not correcting — you are totally spot on! And you absolutely picked up on the why – keep the calm. Many days Millie still thought we were in a small town in Alabama, and some days she thought we were in her old sorority house, and MANY days I was not her granddaughter but simply a nice lady providing lunch and watching tv with her.
If I had corrected Millie she would have either become angry or embarrassed – and that helps no one. So if L thinks she is in New York, well then you are in New York!
I think empathy is your best tool when dealing with a loved one who is, for one reason or another, not in his or her own mind. When I was 12, my Granny’s mother, my Mammaw, who was in her early nineties and firmly in the grasp of dementia, moved into my Granny’s house. And when she was having one of her bad days and was particularly mean, I dealt with it by reminding myself that it must be absolutely terrifying to lose your memory, to wake up and KNOW in your heart that this or that is true, but to have no recollection as to how or why that truth came to be. Mammaw would wake up some days and have no memory of the last 20 years or more of her life. She wouldn’t know who I was, who my brother was, or why she couldn’t see the Ohio River from her porch (despite living in Fairfield, Alabama for 70 years, sometimes she regressed as far back as her childhood in Portsmouth, Ohio). Sometimes she would be her regular, sassy self, putting on coat after coat of her hot pink lipstick and getting dressed to the nines just to watch TV all day. And sometimes, she was caught in a heartbreaking no-man’s-land between her two selves. Once, she asked my Granny, “My sister Dorothy, she isn’t still with us…is she?” While it is not really possible to know how she felt, I just kept imagining feeling that frustration you get when you can’t remember something off the top of your head all the time. It helped me cope with her bad days and helped me appreciate her good days.
Another great tool is your own memory. Mammaw said some truly horrible things to me on her bad days. And some of the things she said really did hurt my feelings. But I just had to think about the great times I’d had with her when she was herself. All the Ovaltine and TV dinners she made me. All the walks we had taken together. How she gave me a stuffed bunny EVERY YEAR on Easter. How, soon after I read Harry Potter, she told me how Hermione was pronounced because one of her favorite actresses back in the day was named Hermione. Reminding yourself of the good days you have had with someone makes treating them with kindness on their bad days easier.
I found that the DVD player could be a valuable tool too. Mammaw was often content to just watch whatever was on TV (sadly, she did love that Walker, Texas Ranger), but sometimes she demanded that we put it on Columbo or Perry Mason or something else that just really doesn’t come on anymore, much less on primetime TV. A lot of those old shows are available in full on DVD now, so if you know that your loved one likes to watch a certain show at 7:00 every night, pick up a season of it on DVD. Something familiar on the screen can be very soothing, even if it’s the same episode over and over again. And if it’s a comedy that they like, doubleplusgood because it’ll get them laughing and improve a bad mood.
Perry Mason! Love it. Millie loved ‘Murder She Wrote’ and we watched every episode many, many times. (now whenever I watch a new crime show and a character has that aha crime solving idea I yell out, “Jessica Fletcher moment!”
Wow, this great, Dresden! I watched my mother take care of her dad, then her mother and then my dad as each grew ill and passed away. She was the true caretaker in our family and it hurts that I am in PA while she is in NC and I can’t be there for her right now. Fortunately she doesn’t need help yet but I wonder what will happen when she does. The ones she took care of never lost their mind until the very end but my mom had to deal with issues of when to put someone in the hospital after a fall and when she could physically take care of them (mainly my dad). My grandma suffered from “sundowners” – when the elderly get extremely agitated & ill-tempered only at night. She died trying to get out of her “nursing home” bed. The alarm had come unattached and she fell and choked. The hospital lost it’s entire overnight care ability over it. It was sad but in her 90s with some dementia, I think she was just ready to go.
I have always had a heart for the elderly. I got my high school service hours in by going to nursing homes and reading to elderly women but this is an awesome summary of what to be prepared for! Thank you!
I am so sorry about your Grandmother, Sarah. That is just awful.
I think things get a little dicier when it’s your parent and s/he still has (mostly) all his/her faculties. My father and I were locked in a constant power struggle. I didn’t want to take away what little control he had left but as the caregiver I needed to be in the driver’s seat. And his preferred routine was to… um… NOT HAVE ONE. So frustrating. But I never regret having done it. In fact, I keep meaning to find a place to volunteer as a companion.
Thanks for posting. This is conversation that needs to continue as the Baby Boomers age.
I agree – the control issue is a HUGE one. In a bizarre way Alzheimer’s was kind to us. As the stages progressed Millie allowed us to take care of her more. But there was always, always, always that fine line of making sure we weren’t bossing her around but guiding her.
Thanks for writing this. Many of the lessons would also have been applicable when I was caring for my mother — though of course caring for parents and dealing with early dementia both bring along their own additional issues.
I would say, though, that some lessons might be more applicable for dealing with Alzheimer’s than other types of dementia or other medical issues. #3 on staying three steps ahead wouldn’t have worked with my mother’s type of dementia, as she would have been aware that her wardrobe choices had been limited and she was being “treated like a baby.”
For me, that time was the worst but not the best. Don’t know if that’s because I wasn’t involved in daily caregiving or because my mother’s decline was so different from Millie’s or what.
And oh goodness, the car issue. What a quagmire. Ugh.
Looking forward to reading more from you.
I think there is an entirely different rule book for taking care of your own parents (maybe you & Stolen Eggs from the comment above can outline the differences because I can not even imagine)
Issues of control were huge for us. I think within the early stages of Millie’s Alzheimer’s we would have been shut out for giving her wardrobe prompts. That was still when she was able to dress herself, when buttons were no big deal and zippers easy. When we crossed over that line into the world of elastic pants it was a relief for her to not have to make some choices.
Thank you for writing this post. Our family has recently been plunged into this area with my FIL’s jump-off-a-cliff beginnings into early-onset dementia. (Not that he jumped off a cliff, just that it’s all happened so suddenly.) It’s as if he’s turned into a completely different person in the last two months. He can’t remember anything, he’s asking the same question over and over and over, and he’s become tremendously argumentative and verbally abusive to my MIL.
We just bought whiteboards to hang around their house with answers to his most FAQs (e.g., Am I due in court today?, What about that settlement?, Where are my pills?).
My aunt is currently losing her battle with bipolar/schizophrenia, and this helps. She’s not all that manageable at the moment so shes
In the hospital.
Thank you for writing this. It’s a valuable knowledge set for anyone to have.
My father was in his 50s when he was diagnosed with dementia. I wish I’d known then (my early twenties) what I know now. He used to ask me who was in charge of this ship/company and I’d say, “You are Dad”. That was the WRONG thing to do. He wanted someone else to be in control because he felt so confused. So not only not correcting him but taking charge gently. Be the boss/captain/director of whatever place they think they’re in and handle their request.
Also, I’ve read that happy ending movies make them happy for hours afterwards even when they don’t remember the plot and the reverse is true about tragedies/overly dramatic/sad ending movies. So, put on a comedy/rom com.
Don’t be afraid to take the car keys away– just change the conversation if possible. My mother and I used to hide the keys and call them “earrings” because we knew my father wouldn’t be interested in jewelry but would certainly prick up his ears if we mentioned “keys” or “car”.
Fanny packs- my father wore one with his driver’s license and some photos in it. He could look at it and put anything else he considered important in it. Since men don’t carry purses we found it helpful.
If they go into a nursing home– be there often enough to make a presence felt by the staff and also be kind to the staff/learn their names/interact with them. They will take better care of your loved one if they know you/them more.
Do you ever take comments by email? I tried clicking on your email button up top but got a 404. Preparing to embark on this journey with a parent…
Stumbled upon this and it was really good to read for me. I’m the oldest adult grandchild in our family and it often times falls to me to step up and do the things that neither my mother nor my uncle want to do with my grandmother. (Oh how skilled I’ve become at navigating the complex maze of setting up doctor’s appointments for things that I’m not sure what they are.)
Though I was wondering (and you can answer this privately if its too long for a comment) how I can ease my uncle (grandmother’s oldest son) into having the car discussion. The odd part is he *knows* she needs to not be driving (we work together and we regularly converse about grandma at work) but he flat out refuses to have the discussion with her or with my mother.
I have come to my wits end with both of them (mother and uncle) and my mantra has become “You really need to talk to your brother/sister about this.” as I’m tired of being their go-between.
One of the hardest things to adjust to is that in my grandmother’s mind *I* am *her* daughter, not my mother’s (this comes from the fact that she babysat me for YEARS when I was young). I’ve become pro at just letting the “your brother” comments roll off my back thankfully.