While Gram has been limited in what she can do and how fast she can go, she has usually been up for an adventure. She goes where we go. When we do something fun or go on an adventure, people always ask, “what did you do with Gram?” We can’t leave her home alone so we take her almost everywhere we go. Our friends know when we come to visit, it’s me, my husband, Gram, and even sometimes the cat.
As you read in “How Did I Get Here“, I have been taking care of Gram for almost five years. In that time, Gram has probably flown on more planes and been on more adventures than she had the previous 91 years of her life. And for that, I am thankful and blessed. Gram goes where we go, and I am sure we probably wear her out, but she just keeps ticking like the Energizer bunny. So strong and inspiring.
Although we know we need a “Break from Gram“, we also know if she goes where we go, she will enjoy it. We all will. Sometimes she takes more coaxing to start the adventure, but almost every time she says thank you and has a huge smile on her face at the end. Since 2016, she has hiked Cooper’s Rock, done shot ski’s in Copper Mountain, sat on the beach in the Outer Banks and Virginia Beach, been on our boat for over 140 hours, sat in between us on the golf cart, and spent hours in the car driving back and forth from Florida to Pennsylvania. Whether our adventures are up and down the East Coast or just a jaunt in the car to the nearest ice cream shop she always seems to have a good time.
Then it happened. This summer, Gram got weaker. It all seemed to have started with a sore on her ankle. Then her right leg was numb so she was getting up several times a night trying to “walk it off.” I was so tired and frustrated. Getting up to walk around on a numb leg just isn’t a good idea. It was then that I started doubting my abilities as a caregiver. Could I continue doing it and keep her safe?
She became more and more wobbly and unsteady. One morning she fell and hit her head. We ended up having to take her to Med Express for stitches. By the time we got there, she didn’t even remember she had fallen.
About a month later, we had five days of respite care (through Hospice), and although we wanted her to go where we went, we also wanted a few days away. Well, when we picked her up 4 days later, she still had the same socks on she went in with. They had her in a hospital gown instead of the clothes I sent with her. Her food was to the side of her bed and completely untouched. She wasn’t up, dressed, packed, or even close to being ready to go home. I was there 30 minutes getting her out of bed, to the restroom, washed up, and into her clothes. Not one person came by. Next, I realized her toothbrush was still in the wrapper. I was LIVID, to say the least.
After that, gram got weaker still. She started having trouble walking even short distances. She started using a walker. Because she had been in the bed for so long, we had to make her walk short distances to try to gain some strength back.
Towards the end of summer, her congestive heart failure started filling her with fluid. She was having a very hard time breathing, and we were scared she wasn’t going to make it. She was so weak, and we were worried we were going to lose her. Hospice was wonderful again, got her some medications, and Gram, the superwoman that she is, nursed her way back to health.
Gram definitely isn’t as strong as she once was and it definitely is getting harder on us as caregivers. She is slower, she is more forgetful, she is weaker, and she is even having trouble standing up. We are so blessed to have had all these wonderful years with Gram, but caregiving is getting harder and harder. She still goes where we go, but it takes a lot more effort and takes a lot more time. She gets worn out more quickly. She needs a wheelchair more often than not. She doesn’t want to go as much anymore either. And we realize it is hard for her and on her body. Sometimes we wonder if we are pushing too hard or expecting too much.
Over the past two months, I have realized that Gram doesn’t really want to get out of bed anymore. Even when we were visiting her daughter and great-grandchildren, she would say “just leave me in bed.” It hit me that she didn’t realize that she was missing time with the kids or her own daughter. Even though she asks about my mom and the kids all the time, she showed little effort in wanting to spend time with them and that made me so sad. I know in her heart she wants to be a part of it all, but in her dementia brain, she could care less.
This realization made us start seriously thinking about getting extra help with Gram. We found a lady who seemed perfect and jumped right in helping Gram, but three days later she quit saying the job was more difficult than she had anticipated. This made us realize that it was time to consider a memory care facility. We do not want to do this by any means, but we can’t take the chance that a caregiver is going to quit on us again, forcing us, and Gram to start over again with another new face in the house . We are also wondering if Gram just wants to sit and do nothing. Does she try so hard to keep moving because she doesn’t want to disappoint us or let us down?
Although I can’t imagine taking her to a facility and dropping her off, we are not confident that we can keep her safe at home. We are so torn. I have been crying on and off for two weeks now. I took her to get her hair done and she could barely make it to the door. We took her to the store, and she could barely get in the car. We took her to sit out by the pool and she tried to get up by herself and fell. We cannot keep our eyes on our 24/7, and we just don’t know what to do. We also know Gram has lived an amazing life, and we want to live ours, too. Does Gram just want to sit in a chair all day? Does she just want to dream of her lost loved ones? Are we pushing her too hard to push herself? We understand that this may be one of the hardest decisions we have to make, and we really don’t want to make. We are scared and nervous and worried about how she will adjust. We are scared, nervous, and worried about how we will adjust. But it appears “life changes” are on our doorstep.
Has anyone had to make this type of decision? What did you do? How did you decide?