Posted 9-10-19, which, like the next several days, is the same forward as backward….a palindrome)
Yesterday was another pretty good day for mom. She is sleeping/resting much more these days, so much so that my sister, her daughter and her daughter’s little boy visited yesterday at a time mom would usually be awake, only to find her in bed with her eyes closed (but awake). When mom, and I suspect many/most with the disease, are laying flat, she is much less alert. I wonder of blood flow in the compromised brain in a prone patient works differently than in a sitting/standing patient? I would love to hear the wisdom of some of my super-experienced caregivers about that.
Regardless, mom opened her eyes and kind of stared away like she normally does. She gets rigid/sort of catatonic pretty often these days. In fact, it really wasn’t until Wilder announced his presence as only he can do that she perked up. Mom and the Sweet 17 always love children although they often mistake them for their own. They may or may not know how to handle them anymore, so always stay very close. The verbal conversation was very minimal, as it typically is, but she does communicate.
So, how can we “communicate” with our loved one when they can either no longer talk or when they offer more of the babble common to the disease? Here are some tips (From me and from the ALZ.org website) that will help when the talking has become more challenged in late-stage dementia:
- Approach the person from the front and identify yourself. This is important because they do not process communication nor sounds the same (or at the same speed) as we do. My mom either doesn’t realize I am coming toward her, doesn’t know what sound she is hearing or is just confused. At first it seems like she is disinterested, but she is still processing the stimuli…or perhaps is still processing something that happened a few minutes before. It is a sad analogy, but if you are a computer geek like me, think of her as “clocking”. (The hourglass/little swirling ring).
- Also note: there is disagreement on whether to use a title (mom, grandpa, etc…) or a name, but patients often remember their name more than their title. It would feel weird for me to call mom by her name because I never had in the previous 46+ years…but if that is the only way she would know she is being spoken to, it would be worth it I suppose. I still don’t…old habits die hard. I enter with a standard “There is the best mom on Earth as I enter her field of vision”. She doesn’t know my name or particularly who I am, but she knows I am in her tribe somehow…and that works for me just fine.
- Make eye contact to initiate the communication. With mom, this may involve getting on your hands and knees because she is probably working on her fidget blanket and won’t easily get enticed to look up. She, like many, are pretty rigid and struggle to life their head, so you may have to improvise at first especially.
- Encourage nonverbal communication. Mom smiles. Some squeeze or kiss your hand. Some make cute sounds. Mom loves to make raspberries or stick her tongue out at me because it makes me laugh. To me, that is better than telling me a knock-knock joke any day. When you make and keep eye contact, you just kind of figure it out. We are built being able to read non-verbal cues. These cues also help me determine if something hurts for mom since she almost always says No when asked if she is in pain. Read between the lines…you will figure it out. If this numb skull can figure it out, I am sure you can do better.
- If you don’t understand what the person is trying to say, ask him or her to point or gesture. This may help on some more than others. Mom’s movement is so slow, I may have to be the pointer.
- Use touch, sights, sounds, smells and tastes as a form of communication with the person. This is a very good tip from the Association, but be careful to not overload them or to not be too fast. Mom and the Sweet 17 and her new posse in the general population love period music…stuff from their youth or formative years. They love it. They also love the old hymns. Pictures, fidget blankets, stuffed animals, baby dolls, and the like can open up communication to a point as well. Smells and tastes may be useful in either a reminiscing moment (apple pie smells?) although mom never really responds to smell. Long-time smokers may have less ability in this area as well.
- Consider the feelings behind words or sounds. Sometimes the emotions being expressed are more important than what’s being said. I can hear inflection and cadence in mom’s voice when she is speaking in only onamonapias and sounds such that I can tell if she is asking a question or just talking. If you want some practice and nobody is around to tease you, stand in front of a mirror and say some sentences and ask some questions. You naturally have a different sound when asking a question. Mom does that too. Here is a quick little video I made to try to show this:
- Sing familiar songs with your loved one. Song tunes are more resilient in our memory and the lyrics are often too. It is OK to sound rough/out of tune or mess up the words and it is ok if they do the same.
- Treat the person with dignity and respect. Avoid talking down to the person or as if he or she isn’t there. The tendency is to talk to a patient with end-stage dementia like a toddler. This is natural not unlike how some people talk to someone who doesn’t understand his/her dialect/language. Do what you want, obviously, but this isn’t necessary. Speaking slower, enunciating carefully, making eye contact when you talk, and speaking at a volume that can be heard are more important.
- Smile. Hold his or her hand. Love him/her. That goes a long way to communicating what is important. Patients of all sorts can pick up on sadness or anxiety. Excuse yourself if necessary. Psych yourself up if needed… But be happy.
- It’s OK if you don’t know what to say; your presence and friendship are most important. It is also OK to not understand what they are sharing perfectly. Sometimes with mom I just repeat what she said or the last part of what she said, with empathy and love. (One source calls this “mirroring”) Every once in a while she will imply I didn’t understand…and that stinks. BUT, she knows I try.
- Take your time in speaking and listening.
- Don’t assume he or she can or cannot hear or understand. Just do your best and love on them either way. There is nothing I have said here that is a guarantee because, sadly, the disease is different in everyone. All we can do is do our best and cherish the times of clarity we have.
- Talk to your medical team if there are any sudden changes in communication or signs of a stroke. There may also be medicines or symptoms that could cause even worse speech difficulties.
- Grant yourself grace if it doesn’t work out and don’t give up. Just being there is a blessing to you and your loved one. Help others understand how to do these things so they can be there for your loved one too.
- This is kind of a pet peeve, but don’t ask questions that require memory, especially those that begin with “Do you remember when blah blah blah….”. This makes mom confused and sad…and serves zero purpose to ask. At best, replace questions with something like “Mom, you sure loved fishing or travelling to X” and smile.
- Please shoot me a message if you have other tips…we are a community here. We are all in this hot mess together and we all need each other.
I look forward to seeing mom again tonight. Last thoughts today…Don’t give up, friends! I know this stuff is hard. They are worth it! 🙂 Take care of yourself. Really, do it…be good to yourself. The memories you can share in these last days and weeks and the growth you see in yourself will be part of the legacy your loved one leaves, and that alone is more than words can say.
#EndALZ
Thank you! Encouraging each other helps a lot.
I totally agree! We are in this deal together. 🙂