Help! Grandmother has full-blown dementia after hip surgery: what do we do now?
Sep 23, 2022After Grandaddy passed away, Grandmother's life got very difficult. And consequently, so did ours.
That sounds like a selfish thing to say, and we don't mean disrespect by saying it, but darn, it's true.
She and Grandaddy had been married for sixty-four years, and you just don't bounce back from a loss like that. We get that. We missed him too. But it wasn't the death that was the issue. It was the undiagnosed dementia. She kept outsmarting the tests!
Grandmother was really smart. Like super smart. She could think circles around people, win at all word games, crossword puzzles. She always got in the last word, and it so happened she was a feisty Texan. You don't mess with Texas, or so they say. That was pretty much her m.o. You do what she says, and we all learned that early on, knowing that we must comply with all wishes and whims at all times. It was manageable most of the time as Grandmother was never malicious or dark-hearted. She just had a few annoying habits, as we all do. We learned to navigate all that and still pretty much get along fine.
But that all began to change, and I'm embarrassed to admit, that's pretty much where we kinda went off the rails a time or two, ehem....
The last ten years of her life, we noticed changes in the way she would behave. When we asked her about it, she would get defensive and angry and uncooperative, so we stopped asking. We just noticed peculiarities in her behavior.
She was always an immaculate house keeper, no dust, no grime, nothing out of place, everything in order and lovely. But that changed....
We first started noticing changes in the mail. She opened the mail and clipped the envelopes to the invoices or statements or letters. Then she began stacking them into piles. She told us she was too tired to deal with them right then, our offers to help her were refused. The piles began to grow higher and taller and wider. They took over the kitchen table. The piles took over the kitchen island. She asked to borrow both of my six foot Costco Tables, and the piles filled up the tables. BOTH of them! The piles were on the coffee tables and the lamp tables.
It began to be such a problem they had a hard time getting around the house. But those piles kept growing and she refused our help. We finally brought in an outside expert to help her see that there was indeed a problem. She was bright and happy for the anticipated help, but as soon as he left, she did nothing.
Not only did the piles grow, but so did the collection of napkins from McDonald's and Burger King. Hundreds and thousands of napkins were kept in plastic bags hung in the closets. (Little did we know what a goldmine that would have been in 2020 with the toilet paper shortages during Covid!!!) Drinking straws were placed in grocery bags, and boxes of canned Diet Coke began to flood her living space. Every outing became to be about Diet Coke and a McDonald's hamburger and French fries. Nothing else. That was her only food source. Of course, any dessert was welcomed.
Another thing we noticed was that she kept tripping and falling in really weird places at home. Like she would trip over the magazine stand in the corner of the living room. How do you even get there let alone trip? And why would you want to stand in the corner behind the magazine rack? Their home had lovely thick plush carpeting so the falls never really injured her, unless she fell on top of something, like when she fell upon the tiny rocking chair in the other corner. That produced bruising and multiple chiropractic visits. She fell every week or two. It was very upsetting to her and Grandaddy and to us as well as we drove her to her doctor visits.
We also noticed changes in her memory: she would insist on something having happened and would be adamant about it. The only appropriate response was to agree with her. There was no convincing her otherwise.
These changes all took place over the space of about three years. Then, they downsized the home and moved into a group home.
That event is challenging and difficult for anyone, but for her, it was very difficult and she called the police in because of the thefts of her purse and Grandaddy's wallet. The police conducted a search and she blamed all the evil staff members. Turned out she had hidden them in the closet and forgotten. We knew better than to admonish her.
It was so difficult to have conversations with her because of her nature and habits, but especially because of the undiagnosed dementia. She was so smart that she always passed the basic MMSE, Mini Mental Status Exam. Heck, I can't even pass that stupid little test, and she always breezed through it, so they never tested her further.
What none of the doctors told us was that there are other more conclusive tests that take more time, but are very specific when diagnosing what type of dementia a patient can have. These are much more extensive and comprehensive tests that can detect dementia much earlier than when most people search for it. Had we detected it earlier, there would have been medications that could have helped her, and potentially slowed down the progression of the disease. We also would have learned how to care for her without provoking her.
So, after Grandaddy died, things got worse in a hurry. She refused to remain the the home where he passed away so we moved her again to the the community place that she had previously visited and liked. Well, with each move, seniors deteriorate a bit as they are trying to learn a new place and navigate a new way of living. She complained all the time, she became very uncooperative and she was very unhappy.
The thing about assisted living facilities is that they are hands-off until you need help. At the time, they charged us an additional $500 a month for each additional level of care that was added. She needed medications given twice a day and couldn't remember to take them, so that was $500. She needed showers and that was another $500. We paid for the service, but she refused it every day. She wouldn't let them near her! She used baby wipes in place of showers and forced them to leave her alone. There was nothing we could do to get her to allow anyone one to help her, so we stopped the extra money output each month.
Then we found out one night that she and the other people at her dining table were exchanging medications. There were senior drug deals going on right there in assisted living! Somehow they were able to convince each other that they needed each other's meds and then they would feel better. We notified her authorities on that issue and thankfully, it seemed to grind to a halt.
Fortunately, we decided to have the mail come to our home, so it was no longer stacking up in her new home. However, the napkins and the straws kept accumulating and from time to time we had to purge them.
One fateful night, we all went out to dinner as a family, and she was particularly belligerent. She just wouldn't cooperate. When we took her home, my husband asked her to sit while he got her mail. She refused. He asked again and said he didn't feel good leaving her. She would have none of it and she defied him to make her sit. He considered the options, gave her the dignity of her choice, and left her to get her mail.
He returned within a minute and a half to find her on the floor unable to move.
The staff was notified, the ambulance and paramedics came and transported her to the hospital. The x-rays showed she had broken her hip.
Surgery was the next morning.
Surgery is a difficult thing for anyone, but especially for the elderly. She was 86 years old, had undiagnosed dementia and went under full anesthesia. There seems to be a common knowledge among all the nurses that we dealt with. They told us that after surgery, elderly patients are either fine or permanently altered and unrecognizable as the same person. They say that the anesthesia can change them completely. In our situation, she never came back to us.
She was totally out of control. With a broken hip, she refused to stay in bed. She pulled out her IV's and pulled her clothing off. There was no way to keep her in her hospital bed as it is illegal to confine patients. We struggled to protect her dignity and be sure that the medications remained inserted. She fought us tooth and nail.
My husband and I took non-stop shifts to keep her in her bed. He travelled for a living and I was ill making this very difficult to do.
She was then sent to rehab and fell out of the bed and hurt her broken hip yet again!
We were in trouble and needed a solution, and that's when we called upon our beloved Visiting Angels to keep her distracted and in bed. We got 24 hour care for her while we looked for a place that could help us care for her. We called our dear Senior Referral Agent to find a loving group home specializing in dementia and injuries. They found us the most amazing place and we moved her, yet again.
She spent her remaining three months there in the loving care of these very dear people. She was finally happy for the first time in ten years. They took great care of her before the dementia finally claimed her.
Had it not been for Visiting Angels, the Senior Referral Agent, a highly skilled family therapist, and the many amazing caregivers that helped us, I don't know how we would have survived this very difficult and trying time. I am so grateful for their encouragement and assistance so that we didn't have to do it alone.
Dementia is a cruel disease. It hurts everyone. In Mom's case, she was always in a place of frustration, and the normally functioning family members felt like THEY were the crazy ones. It is a vicious and brutal thing that causes so much pain and stress. Finding the right people who guided us through this time saved our sanity and made it tolerable to continue on.
If your family member is struggling with dementia, there is hope for you! A
life-giving resource is this website:
Please do yourself a huge favor and see how you can be supported.
If you might be looking for some more help and information, come visit our website and maybe we can assist. We have been through the process and we know how hard it can be. The important thing for you to know is that you can get through this. YOU ARE NOT ALONE!
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