Getting old + losing your independence {Dementia Diaries part 2}
This post may contain affiliate links. Please see our disclosure here.
Getting old and losing your independence is kind of drag. I would love to share my exact words on watching a loved one get old but we are a G rated blog so my words of choice wouldn’t be appropriate. -ha. When I tell you I am shocked at the response from my post last week about our new series on the blog, “Dementia Diaries“, I am not exaggerating. The comments and emails you all sent were so kind, sweet, funny, some sad and most importantly, helpful. For those of you who didn’t see the blog post, I shared how my grandfather is experiencing (well has been for a while now) symptoms of Dementia and Alzheimer’s. Sundowning is a term that I had heard before but since my grandfather is experiencing these symptoms more often than not lately, I decided to read up on it and ultimately decided to start sharing our experiences here on the blog. An online diary called, Dementia Diaries. I considered sharing over a year ago when things were really stared to decline for my grandfather but every time I would start to write, I would cry. Now I guess I am just use to it, tears still fill my eyes as I write but it’s getting easier.
Growing up, my brother and I spent a lot of time at my grandparents home while my parents worked. I remember my grandfather always being a super sharp and very strong. He had a small barn where he had a few cows, goats, chickens and barn cats. I loved to head to the barn with him, sit on the stacked bales of hay, and just watch him. He was tough, sometimes mean (never to me) and very stubborn. He was always in charge and made the decisions when it came to my grandmother. They were so old school. My grandmother never worked outside the house and never had her drivers license. I always thought that was kind of strange. My grandfather worked multiple jobs and always made the decisions on everything. Although my dad was always and still is, the only kid he listens to. My dad is the one (he has two sisters) that my grandfather will take advice from or listen to if my grandfather needs to do something. Sometimes I reflect on how much time as gone by and never in a million years did I think I would be writing about my strong and sharp as a tack grandfather, getting old and losing his independence. I certainly didn’t think I would be sharing it with the world to read. -ha.
My dad and son with my grandfather
A couple of weeks ago while taking my grandfather to the doctor, he told me how happy is with dad and how thankful he is that my dad takes care of him and my grandmother. My grandfather was in a bad way before the holidays last year (his diabetes was out of control) and it was then, that my dad told him we were taking over his meds and when he could leave the house. You see, my grandfather still works. Yes, I know that sounds crazy but he still goes to work. He sweeps the floors at the construction company that my dad has worked at for over 30 years. The owner is a close family friend and loves to give my grandfather something to do. Don’t worry, he is only there for 3 hours and takes many breaks. -ha. The problem was, my grandfather’s symptoms of Dementia, sundowning and diabetes was wreaking havoc on his body, brain and ability to make good decisions. Prior to the holiday’s last year in 2015, he started leaving the house at 2 am and heading to work. He started taking his insulin 6 hours apart instead of 12 hours apart. He would come home from working his 3 hours, take a nap and wake up thinking it was the next day and head back to work. Sometimes I had to laugh because the things he was doing were so outrageous, they were almost funny BUT when it started happening more often than not, it was time to make a change. Stay tuned, more on losing your independence and getting old later. Oh and I got through this post with only a couple tears ;).
Meet Jessica
What started as a hobby, Jessica’s blog now has millions of people visit yearly and while many of the projects and posts look and sound perfect, life hasn’t always been easy. Read Jessica’s story and how overcoming death, divorce and dementia was one of her biggest life lessons to date.
I really appreciate your honesty. My 91 year old Father in Law lives with us and dementia is a reality for us. It does effect the family too. We have to plan to have someone home with him at all times and that can be a struggle. I think as our generations age this will become a reality from many more families.
Hi Wendy, I think you are right, this will definitely become a reality for many. Good luck with your FIL and stay in touch 🙂
You might want to get the book “24 HOUR DAY”. It was very very helpful while I was caring for my mother in law for several years. Just mentioning the book brings tears to my eyes. It’s a read for everyone in the family to learn from.
Karen could you please tell me who wrote this book? I were I might find it? I can only seem to find one about recovering alcoholics. Thank you.
I am so sorry…..it’s called the “the 36 hour day”.
Sundowning is quite common for people with dementia. Some believe it is from tiredness and a long day. Try to connect with him using his long-term memory which is likely quite a bit sharper than his short-term memory. Talk to him about his past life. It’s called a life review and is quite comforting . Don’t tell him he is wrong when he states something that happened in the past as if it happened today. Rather, go with it and gradually change the subject. This is called validation and is very helpful especially if he is having a terrible reaction with verbally abusive behavior. He seems like a wonderful man with many memories to share with all. Best of luck. Contact the Alzheimer’s Association for gadgets such as alarms to use if he is a wandering risk. He is very lucky to have such a caring family to take care of him!
Lovely post. You are handling this with love and patience.
Just remember, , you cant do it all. Your whole family will have to work out some sorta schedule. YOU must take breaks. After running an Alzheimer facility for 10 years I am still so mad they haven’t found something to help. Families suffer more than the person carrying this heavy load. Take it day by day. Take deep breaths and pray for strength. My thoughts are with you.
Anyone who has experienced the decline of a loved one because of dementia can identify with what you are experiencing. I hope this group can be a support and encouragement to you. My mom had early onset Alzheimers, and I think her suffering came in the years before and just after her diagnosis. Our family has often reflected on our realization that she had clearly known before we did that something wasn’t right. Knowing my mom who internalized stress and kept lots of her thoughts to herself, I weep when I think of how hard painful that must have been for her. Then came the hallucinations, something I don’t think everyone has. By the time it became impossible for my dad to care for her at home, she was moved to a nursing home where my dad was with her most of every day. She required lots of care, but she was much less troubled and more peaceful during those years. It was gut wrenching, and “the long good bye” is an apt description of that difficult time. Yet, in the midst of it all, we saw my dad at his finest, devoting himself to her care and showing his love for her. Having experienced that—and we would not have called my dad a patient man nor one who handled frustration well—has become a treasured memory and only increased our love and respect for him. I pray your experience will ultimately leave you encouraged and joyful in spite of the struggle.
Wow Ellen, sounds like your dad did a great job taking care of her and you were able to see him at his best :). Sometimes it’s the most difficult moments that we see the best in others. So sorry that you had to see your mom go through such a difficult end of her life. I am so grateful that I have the opportunity to live with my parents and grandparents, in fact, I can’t even imagine it any other way. Thank you for sharing your story about your mom 🙂
Thanks Gail! My grandparents have me, both my parents and one of my dad’s sisters comes 1x a week to help out. As they get older though and my grandfather can’t drive (it’s coming soon), everyone will need to chip in more and assist with doctors visits, grocery shopping, cleaning and whatever else is needed. My grandfather drives my gram to all her appointments but that will be coming to an end soon. It’s too much for him and he gets confused and has no idea what the doctor is talking about. My mom has started going to the doctors with my gram but she works full time and it’s a lot for her. My dad has two sisters and you are right, everyone in the family needs to pull their weight and should help out. Having a schedule is important, I agree.
My Mom died of Alzheimer’s when she was 79 years old. My dad while all this was going on had similar memory and judgement issues but just enough difference that his doctors did more tests and found he had Hydrocephalus, commonly called water on the brain. He had surgery to place a stent and was much better. Make sure they are doing a thorough exam of your grandfather and really making sure it’s Alzheimer’s which really only can be definitively diagnosed with an autopsy. Your grandfathers behavior sounds so much like what my dad was doing at the time that I though I should comment.
Sorry to hear about your mom Chris. You are right, there are so many things that can help. Thankfully, we think he has great doctors and so far we think they have a good grasp on it. Hopefully he doesn’t get any worse and it stays somewhat mild. If it does, we will most certainly be heading back to the doctor. Thanks for your advice! 🙂
We’ve been dealing with similar situations with my mother-in-law and it’s been extremely hard to grasp for my husband’s family. I fear the day when we’ll be dealing with it for my parents. Thanks for sharing and stay strong.
Thank you Katie. It’s inevitable for most families, you just do the best you can. Family needs to take care of family. Thanks for your words of encouragement 🙂
It is so good you are there to help out. My mom is from England and my uncle and aunt are still there. He was so smart and they traveled all over. Now they are both suffering from dementia. My uncle is worse than she is. They didn’t have any children so basically we are it. A friend checks on them and emails my mom on their condition. She even sneaks upstairs to clean their bathroom. She found out someone has moved back and they are afraid this person is taking advantage of them. Needless to say we very upset about this.
Keep us up to date with your grandfather.
I know exactly what you mean about worrying someone would take advantage. That would never happen here with my grandparents as we are all here to watch over them BUT I see so many elderly who are ill/confused/angry/sad at the doctors when I take my grandparents and they have nobody to watch out for them or even help them understand. It’s so sad. Good luck with your uncle and hopefully your mom can find someone to look out for them.
Your post brought me to tears. My mom has been on a slow decline since my dad passed away 8 years ago. It is such a difficult thing to watch happen. My prayers are with you and your family.
Thank you 🙂 Sorry about your dad and wishing your mom the best.
My heart goes out to you. I was very close to my maternal grandmother. I adored her. She was the liveliest, most energetic person & as she grew older (85 +) she would say, “Geting old is not for sissies, but I can do this”. For the most part she was sharp as a tack, but by 90 she started to forget what she had just said and repeat herself. She started to forget what she was doing in the middle of tasks (like cooking) and that was a worry. It was so hard to watch her lose her independence and it was hard for her to let others take care of her. My mother passed away suddenly in May 2008 and my grandmother was so strong. She hid her grief and she just wanted my siblings & me to be okay. One day that year in early July she ate her lunch and instead of heading off to her weekly Bunco game (still very active) she told my sister in law that she wanted to take a nap & that my mother was calling her – she needed to be with my Mom. She had never before that day been confused about Mom having passed. She never woke up from that nap. To the end she was a great mother & a wonderful grandmother. I think of her every day & whenever something great happens I feel the need to call her to share the news. I will keep you & your family in my prayers – like my grandmother alway said, “You can do this”. It’s hard, but life is a mix of challenges & rewards.
Oh my goodness, your gram’s story. So touching! That is amazing that she was great through the majority of her life and in the end, went to be with your mom. I like the saying, “getting old is not for sissies.” So true! Hopefully my gramp just keeps chugging along and doesn’t get too much worse. So far since we have gotten his sugar under control, he seems a little better. (knock on wood). As long as he doesn’t start leaving in the middle of the night again to go to work, we should be good. -ha.
That is interesting that he would take a nap and then think it was the next day and head back to work. Our pastor just announced he’s stepping down in 3 weeks because he and his family are moving to go take care of his father-in-law who has dementia.
Yes, when he wakes up , he is very disoriented and confused for about an hour.
I grew up surrounded by grands and great grands and learned to love and appreciate what all those older folks could tell me about. They all seemed to be able to fit into their nitch agewise. Great grandfather lived with us for many years. I only saw the side of one who resented aging with my MIL. She never really liked elderly folks and when she became one just could not like herself.
You are doing such a wonderful service with your diary entries. thanks again. I hope this will help this journey by having a place to “vent”
Thank you Brenda!
PS I liked the picture of your son father and grandfather. Looks like they could think up a bit of mischief.
haha all they do is feed my son whatever junk he wants and let him do whatever he wants. haha. He thinks all his grands and greats are the BEST!
My heart feels you pain and sadness because my family and I are going through this with my 97 year old mother. Her wish was that she be able to stay in her home where she has lived for the past 66 years however that came to an end on January 9, 2016 when she suffered two
strokes and lost her ability to speak along with a crushed shoulder which can only be fixed with a complete shoulder replacement and the doctors say she is not able to have this done. Our journey with her dementia started about six years ago with subtle changes at first forgetting small things not remembering to take her meds forgetting to eat then the major things thinking someone was coming into her house trying to harm her and the list goes on. My prayer for anyone who thinks a loved one has the beginning of dementia is that you will give them more of your time listen when they talk and never correct them just lead them to a place and time where their minds can remember and love and protect them. You will face resistance from them but it is worth your time and effort. My mother now has pneumonia and has been in intensive care for a week and we have another battle to face.
So sorry Loraine to hear about your mom. 97 years is an amazing feat. Praying for her and hoping she will be ok. Thank you for the advice. YOu are right about not correcting them. It’s pointless and just makes them upset. I learned that early on last year when my gramp started telling me the same stories over and over. It’s just easier to listen to the same stories :). Good luck with everything and stay in touch 🙂
Jessica, I’ll keep you and your family in my prayers. My father suffered from sundowners and early on-set dementia that was brought on by a traumatic head injury at 66 years of age. During the earlier times, we would laugh, tell stories and “test” him on his memory (we still call my youngest fall risk after an afternoon at the hospital testing him on everyones names). But, slowly the laughter disappeared as my father disappeared into the disease. He passed a few weeks before his 69th birthday but I think about him daily. I’m am happy that you and your son have gotten to know him as well as you have. One word of advice, write down the stories he tells – they will be invaluable one day.
Hi Dee, so sorry to hear about your dad’s injury and battle with Dementia. You are so right about keeping a journal of the stories he tells. That is one of the reasons I started this series on the blog, Dementia Diaries. As nasty, sad and alarming as this disease is, it’s his life and that life, is creating memories too. You just gave me another idea to incorporate my grandparents stories on the blog too :). My hope is that my son, niece and other family members will be able to use the blog as a reference of stories and life events.
I appreciate your posts. God bless your caregiving!
We had four generations under one roof up until recently! My mom died with dementia and was a walker and strong-willed! We finally needed to get her into a home with several orther women with alarms and many locks – she walked up until she could not swallow anymore, her last 14 days! Understanding dementia is also a challenge. My church has a health blog which you may find useful: https://oca.org/parish-ministry/senior/personhood-and-an-aging-mind-and-body
Thank you Betty! So sorry about your mom. This getting old thing is a tough deal :(. Thanks for the blog referral. Will check it out 🙂
We had my father in law live with us for 9 months after mom in law died and for several years before that we were ever present in their daily lives. I want to say that during those 9 months he was living with us he was in hospice care. And before in his own condo with mom they were both on hospice for about 9 months. We were told by hospice that they don’t usually get people that long, only because families wait too long to call for their help. I want to encourage those of you who are caring for your elderly loved ones at home that Hospice can come much sooner than you think and they can be such a source of help and encouragement. Just having them come to bathe dad (he had MS and was totally non ambulatory) was such a help. They took care of his meds and the Dr.s and nurses came to him. Having someone to reassure us as the decline came, someone outside of the family yet part of his care to talk to was very helpful. Don’t wait, hospice can be a wonderful addition to your loving care, and support for you too.
So sorry Jill to hear about your father in law. That is so good to know about hospice. I always think of hospice when someone is just about to die of cancer. I honestly never thought about them and calling sooner! Hopefully we won’t need them for a long time but good to know 😉 Thanks so much for sharing and hope you are having a good weekend 🙂