I’m writing this not to get advice, sympathy or to be judged. This is my therapy and it’s long overdue.
In my last post on August 31, which wasn’t much of a post, I mentioned the summer had been rough due to my dad’s decline. It had become like a full-time job, spending hours with him every day. But we didn’t feel we could leave him alone because he was trying to do things he shouldn’t and then would fall. We even hired a company to provide a person who would stay with him overnight.
It seemed a little drastic to move him to what’s essentially a nursing home, but we didn’t have a choice. The staff at his assisted living facility said they simply weren’t equipped to handle him anymore. And there was no way we could continue what we were doing. My sister and I had no life, and it wasn’t cheap to have someone there at night.
So, we gave our notice and searched for another place. We found a few options, but most hesitated to take him as a fall risk. We ended up going with a sister facility which is conveniently close to me. There are other advantages too, as a few of the staff from the Ankeny location have moved to Waukee or will switch back and forth. It’s always nice to see a familiar face.
While no situation is perfect, I can report that he’s done much better since we moved him. Before, he was having almost constant UTIs. Not one since he moved. They also have found a drug that will help him at night, when he is getting so agitated. He’s not sleeping all day in his recliner. We can finally relax and know he’s safe.
Day to day
People always tell you to enjoy every minute with your elderly parent. I get that. But I don’t feel like he’s the dad I enjoyed spending time with. He gets cranky and rude and thinks everyone is stupid. Yes, there was some of that in him before, but it’s worse now.
His life has become so small. He can’t read anymore because his eyes bother him. He doesn’t watch the news or anything current on TV, except sports-related shows. We talk about who’s died. Occasionally something will spark a conversation about an experience he had as a kid. For instance, he recently talked about how a neighboring farmer would plant watermelons in the middle of his cornfield to keep the kids from taking them. Of course, that didn’t work at all!!
Either my sister or I spend every afternoon with him. Because he’s a fall risk, he has an alarm on his chair to alert the aides if he tries to get up. I know this makes his life very limited, but even before, he never left his recliner. Honestly, he hasn’t done much since my mom’s fall.
Complete dependence
Ever since my mom’s fall in February 2020, he has given up on everything. He immediately handed over all of his financial stuff to me. This includes paying bills (which fortunately, have been set up as automatic payments), making deposits, working with his LTC company, handling his renter’s insurance, closing his safe deposit box, setting up his DirecTV and Mediacom accounts, balancing his checking and credit card accounts, and I’m sure other things I’m missing.
It seems there’s something every day that needs to be done for him. I even had to handle the transfer of his plots in the Alleman cemetery to my cousin since he won’t be using them. I make sure everyone gets their birthday and Christmas checks. I make sure his Medicare Advantage plan is still the right one every year. I work with his financial advisor if decisions or changes need to be made to his accounts.
My sister has her list of “activities” too, so I don’t want to minimize all the things she does. Since he’s moved, I now visit him four days a week and she goes three days. She had been doing all his laundry when he was in Ankeny; now we share that duty.
We take him to outside appointments, which means navigating a wheelchair. It’s a good thing we have helpful husbands!! Fortunately, his medical care is provided there and he can also get his hair cut.
He’s always had issues with his fingers and numbness, but it’s getting worse. He has trouble operating the TV remote and rarely uses his smartphone now. But the biggest issue is his inability to process things. He can’t remember when his favorite baseball or football games are on. We leave him notes everywhere, but he still forgets.
He calls things by the wrong name and then gets impatient with me if I don’t know what he’s talking about. He’ll pick up his phone and try to change the TV. On my last birthday, he even told someone I was 77 years old!! 67 is bad enough.
Those stupid Medicare commercials on TV all the time right now make him question if he has the right coverage. Not that he’ll do anything about it, but he expects me to!! You know – call that number!!
Glimmer of hope
Over the summer, we thought we were losing him. But it was only because hospice put him on a medication that caused hallucinations and lowered his blood pressure. Since he’s been off that med, he’s been fine. Vitals are always good. He always says he has many things wrong with him, but none of them will kill him!!
Every once in a while, he’ll try some physical therapy. But he doesn’t cooperate. He always thinks he knows more than the staff. So they release him, saying they can’t do much more.
There are still signs of my dad in there. Don’t get the impression he’s completely out of it. He’s not. He may be slow, but he still remembers the old days. He has slight dementia but nothing too serious. His concept of time is skewed. And he thinks people are coming into his room.
He loves See’s Candies chocolate lollipops. My youngest niece used to always get them for him at Christmas. We’ve started buying them all the time now. Every time I visit, at some point, I know he’ll hand me a sucker.
One day, I had to go home because I was feeling some minor vertigo. He made me promise I’d call him when I got home. I did, but he could see a car in the parking lot that he thought was mine and it wasn’t going anywhere so he was worried. And just the other day, I went to a veterans ceremony at his place and stayed a while. But it was in the morning and I’m usually there later in the day. He called to make sure I’d gotten home all right. I wasn’t sure if he was sad because I didn’t come back. These things always make me feel bad for complaining and remind me that he is still my dad.
I know I’m not the first person and won’t be the last to go through this. It could be a lot worse. Fortunately, he’s financially set and we don’t have to worry about that. The hardest part is watching someone once strong and independent turn into a person who can’t do much of anything anymore.
I guess that’s the cycle of life.
Though you aren’t looking for sympathy, perhaps you will accept understanding. This is indeed a difficult journey that many of us have taken in one form or another. I hope you are taking care of yourself as well as your father. Sending a virtual hug! XO
Thanks Christie. There are definitely parts of my life on hold right now. I think that’s the hardest because I don’t feel I’m always taking care of myself.
I can relate to so much of what you wrote. Both of my parents are gone now but what you described tracked closely with my father’s final few years. It sounds like you and your sister are doing the best that you can and your father is lucky to have you.
I think it helps to share your feelings – good and bad – and I’m glad you felt comfortable sharing them on your blog. I’ve read the comments and hope that the experiences of others will help you feel less alone.
As someone said, even though we all go through it, it’s tough when it’s you. We’ll survive but I know there will be days when I wonder about that. Thanks Janis.
No, Linda, you are not a whiner. Being the caretaker & advocate to an ageing parent is hard. I was told by a community friend to remember that I have a community – friends, family, formal caretakers. I remind myself that I am not alone in this journey even though I bear the brunt being the family member who’s geographically close & being emotionally attached. I was never my mother’s golden child & yet here I am, as she walks in the world of dementia & frail old age. It is only in this experience that I’ve had my mother tell me that I’m a good daughter & that she loves me. This is life & it shows us who we are & yes, some of what we may have to look forward to.
Thanks Mona. It’s hard not to feel alone at times even though I have great support. I know my dad appreciates everything we do.
Try not to second guess your decisions. It is so hard, I know. I know you are doing everything you think is right, for your dad. Please know it yourself. These are not easy choices to be making. With my mom’s dementia, she was not the mom I knew for many years before she passed. She was still my mom, but not the same woman who I called mom for most of my life. The emotional roller coaster is real, and we all are here for you to vent. Not whine, just vent.
Thanks Pat. We’ve canceled our six weeks in Florida this winter but do plan on coming down for a couple of weeks. I’m afraid we’ll lose access to a condo and have to start that process over. I couldn’t leave my sister to cover for me for that long. Some people make this look easy and I wonder why I can’t. We’ll get through it, I know.
No one knows how hard this is until you get there. When my stepdad died in 2019, I had no idea how bad my mom’s dementia was and trying to keep her in her home nearly destroyed my own life and health. After she got lost coming home from church and I had to call the police, I reluctantly moved her to memory care just weeks before the lockdown. I’m a childless, only child and I bounced through all the emotions you describe. It felt like I was living her life and trying to live mine at the same time. The anxiety, grief and utter exhaustion seemed to last forever. She died last year about six months after a fall and broken hip. It was a wrenching journey but as much as I loved her, I’m glad it’s over. As others have said, please take care of yourself! It’s not selfish and if you want to still have a life after your dad is gone, you absolutely have to give yourself grace and space now! (I know you said you weren’t looking for advice but I wish I’d had more than I could find. It’s a lonely road even with spousal support. And continue to unload here, I suspect you’ll find an untold number of compatriots.) Wishing you well!
Thanks Bobi. Going it alone would be so tough. My husband’s mom died last week after months of going downhill. She was in Arizona so we couldn’t help much. It was all up to his sister who I’m sure is feeling some of that relief and is looking forward to having her life back. I appreciate the advice. I know I need to take care of myself better, especially my diet. Too easy to grab a piece of chocolate when I’m feeling down!!
Be assured you are not alone but it is so hard isn’t it? My sister and I used to share the responsibility but she sadly passed away and now it feels as if everything falls on my shoulders, just at a point where the burden is getting heavier. It makes me feel so guilty when I have moments of resenting the situation and I can fully understand why blogging about it is therapeutic. I’m sure you are doing a great job and hope venting has helped.
I’d be a mess if I had to do this alone. It’s more about my loss of freedom than it is about doing things for my dad. I’ve always been on my own and my job was the only thing I had to schedule around. At this point in my life, it’s tough to change that. I don’t know what I’d do if I was still working. I’m sorry you’re going through this yourself. I know many people have it worse than I do.
Linda, my heart goes out to you. Malcolm and I have been going through the same thing with his mom, and what you are saying here mirrors our experience completely. I shared our story on the blog a couple of weeks ago for the same reasons. I needed to vent, have a mini-katharsis, or just put my thoughts together to make some logical sense of what is happening in our lives.
Watching a parent decline before our eyes to the point that we no longer recognize them is heartbreaking. We have gone from frustration to exhaustion, to feeling guilty, to resolve and back again over and over for the past four months.
You and I could trade stories for hours, (my MIL thought the sprinkler box on the outside of the house controlled the air conditioning temperature, and she fixated on any advertisement that told her she ‘must call this number’ to do whatever. Dementia is a horrible condition, and it is relentless.
We too got to the point of not being able to provide adequately for her needs and moved her into Assisted Living. She lasted 3 days there, as she was intent on going back to her house. With her dementia in rapid decline, we made the agonizing decision to move her into Memory Care, where she has been for the past two months. We hate it, but we know that it is the only way to keep her safe and cared for. We visit often and have pleasant visits for the most part. She is still adjusting to having lots of people around, but we are all in a much better place emotionally.
The best advice I received from others who have walked in our shoes was to ‘take care of ourselves first.’ That notion sounds almost absurd when you are going through it, but it is completely necessary. Managing stress is essential to your good health and I hope you are taking the time you need to do that.
If you ever want to talk, please email me through my contact page. There is no positive outcome to either of our situations, but we will get through this.
Oh Suzanne, I go through that roller coaster of feelings myself. I feel like I should just be able to roll with it, but I can’t seem to. I try to take care of myself and my husband is great at either giving me space or getting me out. I don’t know where I would be if it weren’t for him. I’m so behind in my blog reading. I’m going to go read yours right now. Thank you so much for the encouragement and your offer to talk. I may take you up on it!!
This is so thoughtfully written Linda! I know that my sister who became my father’s primary guardian could personally relate with each and every thing you’ve noted. Taking care of my father literally put her (and her family’s) life on hold. I’n saying that, they also experienced some of the most precious moments with my father in the last years of his life.
Hang in there and know that you’re doing precisely what is best for your dad. I’m sure he knows it even though he might not always say or show that.!! 🥰🥰
Thanks Karen. I know many people have or had this responsibility in their lives and it’s helpful to know they also experience the same feelings. I know he appreciates what we do and I just have to get through the tough days and move on. I wish I were better at that!! Good to hear from you.
It’s a tough journey….”walking your parents ‘home’”. There’s nothing easy about it. You aren’t crazy, selfish, or a whiner. You are a daughter who loves her dad and wishes life was easier for him. I sooooo get it. Go easy on yourself. ❤️❤️❤️
Thanks for saying I’m not selfish because I feel that way a lot. I feel I have no control over my life and that’s not what I expected in retirement. But I also know in the scheme of things, it’s a small amount of time. He’s said many times he wouldn’t make it without us. ❤️❤️
I totally sympathize and understand Linda. It is a tough, overwhelming, thankless job many of us have dealt with. I know in the future you will have no regrets and feel good that you were able to do all that you are doing. It is hard! You are not a whiner! Hang in there and remember to take care of YOU too! I know your dad appreciates all you and your sister are doing, even thought he may not be able to tell you so. ! 🥰
Thanks Barb for saying I’m not a whiner!! There are some days I come home from a visit almost in tears. It’s been tough seeing him so unhappy these last few years especially because I can’t change anything for him. But we’ll survive this.
Thank you for sharing this. My MIL lived with us for 7 1/2 years. It was my idea and it went well for quite awhile. But as her health declined, it became more and more difficult. It’s exhausting mentally and emotionally in a way that is hard to describe to someone who has never experienced it. Hugs.
I can’t imagine having him live with us. For many reasons, I couldn’t provide 24 hour care. I keep asking myself why it’s so hard. I think a big part is the loss of freedom. My dad has to be a consideration in every plan we make. Thanks Karen!!
Every time I read or hear of experiences similar to what you write about here, I feel sad that I’ll be the parent my children will someday have to parent. ☹️
I know what you mean. I don’t have kids so who will take care of me? Earlier in this journey, I was bothered by the fact that this could be my future. It really affected me. I seem to have made it past that, but you do wonder. My dad feels like such a burden to us and just today said, living so long is just a waste of money!! Always the practical person!! He’d like to join my mom. I hope we are making decisions and choices now that will keep us from this situation, but I’m sure all parents think they’re doing the right things along the way. I guess we’ll see some day.
Thanks for sharing your thoughts and experiences with your dad. I fondly recall many conversations the two of us had such a long time ago. He always had such a great sense of humor. You are a terrific daughter and you & your sister have your plates full. My mom passed in February and I miss her every day. So wish we would have had more time together. Take care of yourself, too.
I do try to take care of myself but it’s such a weight on my shoulders. Does everyone feel like this or am I just a whiner??? We still see glimpses of his humor but I do miss that.
This sounds all too familiar. Here’s to the therapy of blogging. Thanks for sharing your Dad with us. I enjoyed hearing about the watermellons in cornfields and Sees Chocolate lollypops.
Thanks Tracey. Blogging has definitely become my best therapy. The only problem lately, though, is I can’t seem to find time for it. I don’t make it a priority like I used to. I hope that can change.
Thank you for sharing your journey with your dad. I’m sure it is hard, but you know you are doing what is right for him and your sister is alongside you in your decisions and caretaking. God bless you!
Thanks Karen. It is indeed hard and mentally exhausting, but we do what we have to do.