My grandmother was diagnosed with dementia about four years ago. The first signs that we noticed of the developing disease for my grandmother were:

• Forgetting birthdays
• Forgetting names
• Becoming disoriented on the bus ride home and not knowing where she was or how to get home

My mother, brother and I figured that if the issues listed above were only occasional occurrences that my grandmother’s disease was definitely not as bad as we heard it could be in other seniors. Also, my grandmother was still able to get up every morning, bathe herself, dress and feed herself, go shopping and even remember to go to the senior center at noon from Monday thru Friday. I mean, okay, she probably didn’t wash her clothes as often as she should have and only shopped the bargain bin at the grocery store, but  we were there to help her. So really, how badly and quickly could her dementia progress? The answer is badly and quickly.

My grandmother, now 91, is far beyond the simple forgetfulness. Her dementia has progressed and the newest signs of the developing disease are:

• Forgetting family members she sees every day – she cannot recall any of us
• Forgetting names of everyone in her family, including those of us she sees every day
• Failing to recognize family, including her own mother, in family photos
• Loss of memory of personal details – she cannot remember her birthday, her age, that fact that she has a daughter, hobbies, husbands, etc.
• Limited memory of only today, possibly yesterday
• No awareness of what the day is, the date, or the difference between reality and fantasy
• Incontinence
• Inability to to bath herself
• Inability to dress herself
• Limited mobility – inability to walk without a walker
• Loss of language – both English and her native language of Spanish
• Constant talking
• Increased agitation and anxiety
• Increased restlessness

The list can most likely go on but one key thing that has stood out recently is that my grandmother is talking more than ever now. She doesn’t necessarily make sense and most times she’s stating the obvious. She whispers to herself more and more and has definitely lost 99.9% of the English language with Spanish being her go-to language overall. The word “thing” is the new name and label of , well, I haven’t actually figured out what specific words have been renamed by her with the word “thing” as she uses that word as a noun, pronoun and a verb in most sentences all at the same time. She’s also using words incorrectly. For instance, she referred to her legs as her “walk” and sometimes asks me to “eat” the comb instead of asking me to give her the comb or to take it back. Either way, she is always talking. And she always thinks that we are conspiring against her or talking about her when we are not having a conversation with her.

When she first moved in, my grandmother looped her statements and questions as she was attempting to comfort herself in a new place. I can totally understand that. She must have felt like she was waking up in a new place every morning for a long time. Building a routine helped that a great deal and now she only “loops” if a typically constant person or thing in her life is not around and so she continually asks for that person or thing. While the looping has almost completely stopped, I fear we are entering the next stage of her disease.

My grandmother is constantly talking. She’s talking through the steps of almost everything she does like going to the bathroom, while she’s going to the bathroom; talking through the steps of drying her hands; talking through the steps while we change her clothes to pajamas; talking through the steps while we are cleaning the house or folding laundry; asking herself where the dog is and then reassuring herself that the dog is still beside her, etc. My grandmother also talks to the people on T.V. which, I have to say, actually doesn’t bother me at all.

My grandma talking to the folks on T.V.

I guess it’s because she seems happy to talk to them and believes they are conversing with her, so why take that away from her, right? I just have to remember not to pause the program for too long because she doesn’t appreciate it when “they” stare at her. She’s also singing to herself more and more now which is actually a delight to witness. But what is also increasing more and more is the talking in her sleep. Her medication hasn’t changed, so why the change with talking in her sleep? It used to last less than a minute and occurred only when she was initially nodding off, with the occasional attempt to eat something that was not there. But now she talks in soft whispers when she thinks she’s alone and for longer. She’s also talking when she’s napping in her seat in the afternoon and while going to bed at night. And the conversations are quite lengthy now. My grandmother’s mind seems to always be on, constantly working out everything that she is doing and everything that we are doing around her. She doesn’t even realize she’s doing it. When we ask her what she’s saying, she says “Nothing. I’m just sitting here quietly.”

So if dementia deteriorates the brain, how or why is she speaking more and more now? Is the increased speech due to the fact that her brain is dying and it or she is trying to hold on to everything she possibly can? Not wanting to lose even what is so routine that most of us take for granted? Enjoying every possible moment before it’s all gone and trying to hold to what took so long for her to accept – being safe, at home, with family? Well, I don’t know the answer to any of those questions. At least not for sure. All I know is that a later stage of dementia includes being bedridden with complete loss of speech. Thankfully, we’re are definitely not here and I hope we never arrive.

So how do I find the strength and love for my grandmother while her disease progresses? I focus on making her happy right now. I focus on her and learn her cues, trying to understand what she is saying and what she is not saying out loud so that way I can communicate with her, comfort her and love her, now and when/if she does lose that ability to communicate with me altogether. I’ll cherish hearing her voice and the songs she sings to herself while she colors in the afternoon. And I’ll laugh with her as she enjoys the conversations she’s having with the folks in the T.V.

How would you find the strength and love in this situation?