Life Lately
PHOTO: Pete Barringer In New Orleans, second from right
If you’ve been reading for the past few months then you know that I had to beg a few weeks off from Design Crush in late December and early January. To explain why I have to go back to before I was born.
I grew up living at one end of a row house, at the other end lived a lovely older couple named Pete and Betty Barringer. They quickly took our young family under their wing, Pete teaching me to hit a whiffle ball and Betty letting me play school with her. And soon enough enough they were just like an extra set of grandparents. In fact one year I made them come to my biological grandparents’ house with us for Thanksgiving! Then when I was 15 my parents’ marriage ended and my mom got engaged to their son, Bill. He was recently divorced as well and everything just clicked. So now my “extra” grandparents were becoming my step-grandparents. Not too bad of a deal.
This past December an existing health condition of Betty’s worsened drastically and very suddenly, she passed away January 1, 2012. But that’s only the half of it, because Pete has Alzheimer’s. After the funeral he had to move back to Oklahoma City with my mom and stepdad for the obvious reasons, and my days are now spent watching over him for the time being. He’s not so far a long as to be in a home, but he’s not able to remember enough to care for himself or be left alone either. We’re sort of in the in between right now, and it’s hard knowing it’s only going to get worse.
I won’t lie, some days are really tough. Especially the ones where he talks about going home and you have to explain that this is home now. But other than that there are some great times, too. I get to hear about his time spent as a soldier in World War II and so many other stories I never would have had the opportunity to know. We all really try to laugh, otherwise everyone might breakdown and cry. I know if the tables were turned he’d do the exact same thing for me in a heartbeat.
Have you ever had to take care of a relative when their health failed him? I’d love to hear any words of wisdom or advice you might have.
Posted In my life
Karin
February 16, 2012 at 9:32 amTwo summer’s ago I stayed with a woman who had Alzheimer’s during some days and nights. Her family was financially capable of keeping her in her home with 24 hour care that was split between about 6 caregivers.
It was tough, and as you know some days were easier than others. I asked lots of questions about her youth, family, courtship with her deceased husband. It was wonderful for me to hear her stories, and I got very familiar with them. I had the leisure though of hearing them and then going home to my real life for a day or so before I went back for my next shift.
On the bad days I comforted myself with the knowledge that she wouldn’t remember it the following day, or even in an hour or two. Some days were sad, others were happy. It sounds like you are doing a great job with and for him.
I would only offer that you should not be afraid to ask for help. Maybe a day program where you could get a few hours to yourself and he could do something fun/new/different.
Ana
February 16, 2012 at 9:43 amThis post brought tears to my eyes. My grandmother had Alzheimer’s and passed away a few years ago. It was so hard for the entire family because she didn’t recognize any of us but she had this lapses where she told us stories from her past and used our names… It was like she was getting better and then it just worsen. I remember when she got very ill, she couldn’t explain exactly where she was hurting or feeling because she didn’t remember what words to use to say it. We took care of her sometimes like a baby and some times like an elder. It was a very challenging time for us, it breaks you to see someone you love and admire suddenly lose their thoughts, memories and the ability to do simple things. Hugs.
sophie
February 16, 2012 at 9:43 amMy grandfather passed away about a year and a half ago from alzheimers. It is a terrible, horrible disease, more so because everyone, including the “patient” is painfully aware of what is happening. My best advice is patience. It is the best gift you can give yourself, and in your case, Pete. Your interactions with him will be tiring at times, and will only get more so as his condition worsens, but patience and love is the best gift you can give. Those moments of clarity that my grandfather had when he realized that he had already asked “but where are we going?” 5 times before were heartbreaking. Therefore: patience, love and forgiveness. They all go a very long way.
Jenne
February 16, 2012 at 9:49 amI am really sorry you’re having to deal with this, Kelly. My dad has dementia (not Alzheimer’s), and the most painful thing is when I have to remind him—AGAIN—that it’s what will kill him someday. He makes really poor financial decisions, so it gets very stressful.
I guess my only words of advice would be to take care of yourself. Don’t underestimate the toll it will take on you to do this every day, and make sure you get breaks from it. Also, don’t feel guilty when the time comes to get him residential care. You will know in your gut when it’s time, so trust that. We just moved my dad into assisted living, and it’s been so wonderful to relax and know he’s safe, being fed properly, and looked after 24/7. He’s a lot happier, too, after some transition time.
I think it’s great that you have had these “extra” grandparents in your life—I never knew any of mine—and it speaks worlds about you that you are giving back the care they gave you.
glynis
February 16, 2012 at 9:58 amYou will never regret the time you have with him. Mixed in the frustration and sadness will be little gifts of goodness. Look for those and treasure them. And if you ever need to escape or scream, call me and we’ll go get a cupcake or liquor or both!
justagirlLaura
February 16, 2012 at 10:12 amI have no wise words of advice seeing as I’ve never been in this particular situation, but I wanted to let you know this post was very touching. What an extraordinary story! My thoughts are with you during what must be a trying time.
Addie
February 16, 2012 at 10:17 amI can only give you hugs and say that I sort of know what you are going through – we recently adopted a 6 year old from Hong Kong with Down syndrome and other health problems… So I get having to take care of someone who you love but doesnt really know always who you are. And yes, its hard, really, really hard some days – and the people on the outside dont get it. All they see is someone loving someone else and they think its all roses and sunshine, when some days you just want to scream, but you know you have to keep going.
So yes, big hugs… 🙂
Kass
February 16, 2012 at 10:22 amI have to say, it’s a very brave thing you are doing for this man. Unconditional love is sometimes the toughest, but like you say, if the tables were turned, he’d do the same. My grandfather has had alzheimers since I could remember. I grew up with practised patience, you can never be short with them, because they really don’t know better. In the last couple years I have grown into my mothers identical twin (when she was in her twenties) and so my grandfather now thinks that I am my mother. He sometimes breaks down and apologizes for things I know nothing about, wishing he was a better person… The best advice I have for you is never lie to them. Its difficult to constantly bring them back to reality, but you have to be their solid ground.
adele
February 16, 2012 at 10:51 amAlzheimers is a cruel illness. My grandma has it & has been in a home for the past 8 years. It’s so sad to see loved ones deteriorate like that.
Happy Thursday hun xoxo
http://www.intotheblonde.com/
Amy@OldSweetSong
February 16, 2012 at 12:15 pmSo I’m playing catching up. And my goodness I want to send a hug your way. It sounds difficult but I am glad you have your family and you all are able to be there for him and for each other. Y’all are right to keep smiling. It is so important.
Lots of love to you, my dear.
shannon
February 16, 2012 at 12:40 pmso sorry to hear about your grandmother. thought you might like to see a piece from the times today, with a great perspective on the illness and changes it brings…
http://well.blogs.nytimes.com/2012/02/16/finding-joy-in-alzheimers/?partner=rss&emc=rss
Mom
February 16, 2012 at 12:42 pmYou know that we could not do this without
YOU Kelly! We are so lucky to have you
to help us care for Pete. Yes it is a rough
road we are traveling today, but also one
none of us would exit off of. I love you so
much! xoxo
Amy
February 16, 2012 at 1:11 pmBetween my husband and I, we’ve lost three grandpas in the last two years. My grandfather had Alzheimers and in the end it was very difficult to say goodbye, because he didn’t know who any of his family was. We did have brief moments were he would recognize his kids, though. The love of my children, my husband, and my friends was my constant. Hang on to those sweet moments with the people that lift you up and you’ll be alright.
E
February 16, 2012 at 1:16 pmI totally understand what you are going through. My maternal grandmother passed away from Alzheimer’s and my paternal grandfather is headed toward the last stages. It’s so hard, so painful, that I try not to think about it.
I agree that laughing whenever you can is key, otherwise the pain can be so overwhelming. I also definitely recommend getting all them to share all the stories and memories they can, because those will stop coming eventually. I’ll be thinking of you and your family.
Madysen
February 16, 2012 at 1:47 pmI was in the same situation with my grandfather, who passed away last year. Growing up as his disease progressed was hard, and it was difficult for me to watch my grandma and parents deal with it. I always just wanted to tell them that worrying was pointless and that the important part was to be SO thankful for every moment you spend with him as he is today. No one can tell you what tomorrow will be like, or even five minutes from now. I know it’s hard, but worrying is useless. Be happy you get to be with him now and don’t think about how you’ll miss him in the future. Remember the good ole days and relish in the moment. Because yes, it will get worse- it’s horrible and painful- but why put yourself through that before absolutely necessary?
Laugh at the little things, it’s okay if he does ridiculous things and you can’t help but laugh. He laughed at you when you were little for doing the same things. But never take for granted each and every moment. Live in the present, because anything else will be painful.
rooth
February 16, 2012 at 2:00 pmI’m glad that you have the time to spend with him and I’m glad that you are there for him and your family. I am certain they appreciate it, even if they can’t tell you (especially when you need it). Thanks for sharing the story with us as well
Katherine
February 16, 2012 at 5:59 pmI’m sorry that you’re going through this right now. I’m praying that you feel renewed strength and are encouraged. Enjoy every moment you have. Your loved ones are very blessed to have you!
jamie brunner
February 16, 2012 at 6:50 pmWow – what an amazing gift you’re giving your family. I have a feeling that – even though this is going to be really hard on all of you as you go through it – after it’s over you will find you’ve been given a gift too. I strongly encourage you to listen to this podcast: http://www.kera.org/2012/01/11/making-compassionate-decisions/ While the whole interview won’t fit your situation, you might learn some stuff that could really help Pete down the road. For example, the interviewee (a clinical bioethicist, medical educator and hospice volunteer) talks of dealing with an Alzheimer’s patient’s war flashbacks – her suggestions are the opposite of what most people tend to do. Good luck to you and your family, Kelly!
alicia
February 16, 2012 at 7:02 pmI’ve never been in this situation but I’m really moved by what you’re doing and your willingness to share about it here. You and your family are in my thoughts.
Kerry / Paper Dahlia
February 16, 2012 at 8:04 pmI am inspired by your selflessness… Hugs to you and your family 🙂
Lindsay
February 16, 2012 at 9:28 pmMy grandma passed away in April of demensia related causes. She was living in a nursing home and would cry that she wanted to go back home- to her house that was sold 3 years ago. It was so hard trying to explain to her that that was her home now. Some days she was fine and her memory was clear and sharp and the next day she couldn’t remember if she had eaten breakfast. You just have to enjoy the good days and try to get through the bad days. Hang in there. He’s glad you’re there even if he can’t tell you.
Vee
February 17, 2012 at 3:09 amMy paternal grandmother (Nanna) had Alzheimer’s for many years before she died – after an initial phase where she was pretty anxious and upset (aware of what was happening), which was really hard, it got easier. I took a lot of comfort in knowing she was safe, loved and able to access great medical care. She took such delight from simple pleasures (sunshine, flowers, kisses) and even when she didn’t know who I was, smiled at my stories and held my hand as tenderly as she had when I was a little girl.
It’s a cruel disease because it is so much harder for the family than for the sufferer. This can’t be easy for you and your family, but I hope the same love for Pete that’s got you hurting will guide you through.
erin / dfm
February 17, 2012 at 1:26 pmOh, love – I’m thinking of you. The reason we moved home from Los Angeles to Indiana was to help take care of Ken’s father, Bill, who passed away last summer.
My only advice (from our family’s experience) is to take the help you’re given. Even handing over your “shift” for 10 minutes while you can go out and grab a coffee in the sunshine is a HUGE relief. Sometimes when you’re caretaking, you feel guilty for leaving (even only for a bit), but it really is better off for everyone if you go outside, take a breath and get a fresh perspective and clear head.
I so admire what you’re doing, love. It’s the hardest thing in the world, but also the most rewarding. Promise. 🙂
Maggie Rose
February 17, 2012 at 5:50 pmWhat a touching story.
My mom used to work as a social worker for the Alzheimer’s patients at a nursing home. She loved to coordinate music hours for them, playing piano and organizing sing-alongs of music from when her patients were young (mostly old hymns). Many of them still remembered the tunes if not the words. Others never sang along but would tap their feet. Music can be incredibly healing.
Caitlin T.
February 18, 2012 at 9:22 amMy dad, who is in his late 50s, was diagnosed with early-onset Alzheimer’s last year. He’s still in the early stages of the disease, but it’s still been hard. I’m afraid I don’t have much wisdom to pass along, but I just wanted to let you know that my thoughts are with you and your family.
Rachel
February 18, 2012 at 1:28 pmMy dad’s father has Alzheimer’s and one of the most difficult things for us to deal with is the contrast of his perfect physical health against his deteriorating mental health. My grandmother also can’t deal with the disease, which makes things difficult. Our favorite thing to do (my dad, mom, sister and I) is to recollect our favorite stories of our grandpa after we visit him. He’s quite a character and often when we visit he’ll do something that is exactly the same as before. We cherish these experience and always choose to enjoy the best, funniest memories together as a family.
Erin
February 18, 2012 at 1:50 pmSo sorry to hear that you’re going through this Kelly! But I know that your family must be so thankful. I’m thinking of you all!
Sherri
February 20, 2012 at 9:03 am“I know if the tables were turned he’d do the exact same thing for me in a heartbeat”. I love that you said that. It’s how I felt about my mom and it’s what kept me going. I just buried my mom, whom I’ve been taking care of in some aspect since I was 20 (it’s 23 years later). I won’t go into what I’ve done for her, I just know that she would have done it for me, and that’s all that matters. Once your Pete is gone, there will be a small feeling of relief, but you will actually miss it all in a way, even though it must be overwhelming for you now. Be happy that you are able and CHOOSE to do this. You ARE a HERO to him, right when he needs one.
Melissa
February 21, 2012 at 12:19 pmJust catching up on blogs and came across this. So sorry he’s got alzheimers! What a horrible, horrible disease to be plagued with.
Unfortunately I have it on both sides of my family (on altering generations: I’m screwed).
My grandmother had it and it was so hard on the family, but it was also so rewarding to be able to care for someone who had cared for us for so many years. Two days before she had a stroke and passed, I was in town with a guy friend, and he let me take his car to run errands for a little bit. I didn’t have a car at that time.
Instead of running errands, I felt this strong urge to call my grandparents to see if I could visit. After hanging up, it was like this voice that told me that it was the last time I would see my grandmother. And it was. We got a picture of my visit and she had short moment of clarity. She hugged me and said, “I love you.” before I left. I miss her so dearly, but I’m so glad I was able to say goodbye.
A few years later, while I was pregnant with Penelope, I taught watercolor classes at assisted living centers. It was such an honor to work with my elders. It was tough to teach with all of the strong bodily aromas around me, but I wouldn’t have traded that experience for the world.
I’m thinking of you and I’m here for you if you need anything!
Kasey
February 22, 2012 at 4:48 pmKelly, I just wanted to stop by to say that I feel for you. My grandmother passed away last year, and my grandfather hasn’t quite been the same since. Family is the most important thing in the world and even though the days can be tough, you just have to remind yourself that you’re giving something back to someone who gave so much to you and in the process, helping them live better (in whatever way they can). Sending hugs your way.
Katie
February 23, 2012 at 5:26 pmI’ve been reading your blog for a while, but this is my first time commenting. What you and your family is going through is indeed tough. The resources and advice given by previous commenters are all excellent, and I’d like to add the Alzheimer’s Association. They have local chapters throughout the United States which host caregiver support groups for people to share their experiences and give each other advice. They are also great resources if you ever have a question about assisted living or memory care programs in your area. Thankfully, there’s growing support out there for those of us who have family members and loved ones with dementia.
JAMIE
February 24, 2012 at 5:41 pmI DID HOSPICE AT HOME WITH FIRST MY DAD…AND THEN MY MOM. MY MOM NEVER GOT TO BAD BEFORE SHE SUDDENLY PASSED SO MOST OF WHAT I REMEMBER IS WITH MY DAD. YOU GET USED TO YOUR DAD BEING THE STRONG ONE AND WITH MY DAD ESPECIALLY HE WAS ALWAYS KIND OF QUITE. NEVER TALKED ABOUT HIMSELF SO MUCH AS ALWAYS TALKIN ABOUT US KIDS AND WHAT WE NEEDED AND ..WELL YOU GET IT. IT WAS ALWAYS ABOUT US WITH HIM. SO WHEN HE GOT SICK I HAD THE GIFT OF CARING FOR HIM. HE DIDN’T ALWAYS UNDERSTAND WHAT WAS GOING ON..HE WAS OFF AND ON BEING “HIMSELF”. I FEEL IN LOVE WITH MY FATHER..KIND OF WHAT A PARENT GETS TO FEEL FOR A CHILD I SUPPOSE. I GOT TO MASSAGE HIS ARMS..AND BACK. I MEMORIZED EVER LITTLE FRECKLE AND HOW HIS SKIN FELT WHAT HIS HANDS LOOKED LIKE. I GOT TO TELL HIM ALL THE THINGS I LOVED ABOUT HIM..TO THANK HIM FOR BEING MY FATHER…EVEN IF HE DIDN’T ALWAYS UNDERSTAND WHAT I WAS SAYING. I WOULD NOT CHANGE A THING ABOUT HIS ILLNESS OR THE PAIN IT CAUSED BOTH OF US..BECAUSE IN IT’S OWN WAY…IT WAS BEAUTIFUL. PEOPLE WHO DON’T GET TO SPEND THAT PRECIOUS END OF LIFE WITH THEIR PARENTS DON’T KNOW WHAT THEY ARE MISSING. AND I WAS AT HIS SIDE WHEN HE DIED. ME…I WAS THERE. THAT MEANT EVERYTHING. IT’S GOING TO BE OK..REALLY IT WILL. IT’S GONNA HURT..BUT IT IS SOMETHING YOU WILL ALWAYS REMEMBER AND ALWAYS HAVE. GOOD LUCK AND GOD BLESS.
Martha
April 13, 2012 at 1:48 pmmy grandfather came to live with me several years ago, he has since passed, but I know that what you are going through is not easy. My only words of advice you have really already discovered, routine is key with alzheimers – things like the newspaper help them know the day and although they may not remember what they read it is part of their process. I learned so much about my Granddad during that time, and for that matter myself (none of which I would give back for anything). Just remember to keep smiling…even when they are shaving their face for the 3rd time in 2 hours…just laugh and be patient
victoria
October 11, 2012 at 12:57 pmHi,
I’m late to this, but I can totally relate to what you’ve been up to. My brother, sister, and I (along with my then-3 year old) cared for my Dad the last year of his life. It was everything you mention—amazing, intimate, frustrating, heartbreaking, and most of all, loving. I am grateful for the opportunity to give back to the person I loved the most, especially when he was so vulnerable. The word, “Bittersweet” doesn’t begin to do it justice, but I thank my lucky stars every day that I was able to put life on hold and step up, just as you have. My thoughts are with you. xo