How To Know Where A Loved Ones Head Truly Is

Mon411

I'm sure much of what I'm going to say is redundant to so many here. Its been about 6-8 months since my mother has been, somewhat, diagnosed. Its been a real struggle learning the best way to care for her, and keep myself grounded. One of the most difficult aspects I deal with, is knowing where her mind is. 

There are multiple times daily when we interact, she seems to remember what we discussed. In a second she doesn't. She'll constantly repeat the same things as if new. She likes to watch the same shows over and over. One minute she'll love it, the next she's irritated with the characters. She used to love crocheting, I bought everything she needs, but whenever I suggest she work on a blanket for one of my children she says, 'not right now but I will'. When I want to get her into the shower, same response, 'not right now, but I will', until I have to get upset to get her to bathe because she truly believes she already has.

I'm now trying to learn how to crochet, as I have a new grandson. She came in, saw the yarn, remarked on how beautiful it was. I suggested she do it, that's why I bought it. Her response was she had no idea I ever had it. 

I get her mind is broken, it's just so difficult when for a lot of the time, it seems she gets things. Then she'll say things that contradict what we've just been discussing, or she talks of the past, of the future, that never really was. Parts are grounded in reality, but the rest, not at all.

My demeanor definitely affects her. I really strive to control my moods, because I know when I'm feeling anxious, stressed, unhappy, she feeds into it. I have nerve damage in my jaw that's affected by the barometric pressure, which lately has been really tough. When I'm going through the pain it's really hard to talk. She constantly asks what she can do, absolutely nothing, but she keeps asking and I don't think she realizes she just asked.

I guess what I'm looking for here, is what others are dealing with, and how they deal with it. I know all of our situations are different, but there is an element of sameness. Thanks in advance for anyone who believes they have something to share.

M1

Hi Mon.  I think one of the hardest shifts we caregivers have to make is the shift to NOT assuming that our loved ones are rational.  You sound like you're still operating with the--usually normal--assumption that she remembers or that she understands what you're talking about.  You have to realize that she doesn't, and give up expecting rational responses.  It's very hard.  You have to learn to NOT try to reason with her, and to understand that she likely no longer understands the steps to crochet or the steps to take a shower.  She used to know those things, but she doesn't any more.  The crochet thing you are describing is a classic loss of executive function--my partner has it with painting and drawing, at which she used to be be excellent-but she can't do it any more without a lot of input and help.  The "I'll do it later" is a classic dodge/unconscious coverup for the loss of skill.

I think a lot of folks who have a lot of "cognitive reserve"--meaning that they used to function at a pretty high level--and with good verbal skills can sound rational for a long time, when underneath they are really a lot worse off than we realize.  Sounds like that's part of what's going on in your dynamic.  And sadly, you are the one who will have to do the accomodating.

There are lots of supportive folks here, I'm glad you posted and I'm sure others will chime in.

sandwichone123

My dh can tell me all about his day--it's clear he remembers it fairly clearly (memory is not his most noticeable loss), but after a 40-minute report I still have no idea of even one data point. I try not to invest too much in trying to hear meaning in his speech, and mostly hear it as his desire to connect with me--if any meaning comes through it's a bonus.

When I start to get down, I remind myself "he's still doing his own ADLs, he's still a nice guy, and he still knows who I am." Those are my three touchstones. That's how I stay calm.

With the confabulation, making stories out of a mix of memory and fiction, you can immerse yourself in the story and ask questions about it, "then what happened?" "I bet she was mad," but you have to completely step back from evaluating whether it is correct history. It's the story for right now, and you can relate through it.

GothicGremlin

That was a really difficult shift for me as well. My sister, Peggy, had a lot of cognitive reserve, and she was diagnosed fairly early, maybe early stage 4, so she was pretty functional back then (mid-2018).  Back then I could have a reasonably rational conversation with her, and feel fairly confident she understood what I said to her. She was compromised to be sure, but okay enough that I could make decisions with her, not for her.

Within a year though, I wasn't quite so confident, especially when she started to repeat, and repeat, and repeat. Thankfully by then I'd read a lot - here on this site, and elsewhere, so I did what all of us do - I'd just roll with whatever story she was telling, or answer her question as if it were the first time I'd heard it, not the 30th.

It's stressful to be sure, and I know I have a "it's fine, everything is fine" facial expression and tone of voice, but do my best to keep that light tone in my voice. I tend to use humor with her. If I can keep her laughing or at least smiling, a meltdown can usually be avoided.

Now Peggy's in later stage 6 and is in memory care. Conversations with her are limited, and I can tell that she isn't understanding most of what I say. I try to keep everything simple, and I try not to talk as fast as I tend to when I'm with others. What I often get from her are confabulations and word salad.  I just roll with it.  She's still so good-natured that even when I'm silently pulling out my hair, I'm still able to keep up with my "it's fine, everything is fine" voice.

The way I deal with everything is by going to the gym a few times a week and listening to music.  I make sure to listen to some favorites every day, and believe it or not, it helps.

harshedbuzz

This helped me understand some of dad's behavior. 

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

Jo C.

We all enter this unwanted journey without a road map; it is a strange and sometimes (often) a very frustrating place to find oneself;  Coming here, to this site, was what kept my head above water when I first entered the world of dementia caregiving. 

It is important to grasp and remember that your mother is no longer able to live in your world reality; for success you must enter her world.  She may sound rational and recall items at one point, but in the next moment or so, she may not be able to retain or process something else and will have false memory recall.  That is part of the impact dementia has upon the brain regarding memory, cognition and function.  It is not her fault. If she could do better, she would.  As her dementia progresses, she will not be able to recall or function at the level she does now.

You have already learned a very important dynamic, and that is; to watch your moods in front of your mother as she will absorb and be affected by them - our LOs are finely attuned to us and how we are feeling and acting.  NOTE:  The link that Harshed Buzz supplied is an excellent one; written by Jennifer Ghent-Fuller, she very well describes the dementia progression losses and changes and why they arise.  Reading it all will help and also, it is a good read for family members so they can gain an understanding of dementia dynamics.

Because our LOs memory and function seems to wax and wane, we sometimes do not realize how compromised they really are and we expect them to be able to continue to do things they used to be able to do which is not reality. It appears your mother is no longer able to crochet as she used to do so beautifully and it is of course, a sad loss.  That ability is a very complex one and the brain no longer can process all of that as well as the dexterity it takes.  She says that she will crochet later; it is her brain's way of putting off what she cannot do - she may have trouble even processing that.

My own mother loved to read; she had a favorite author, so I bought her a new book by said author.  The next day she lashed out at me that I did not even know how to choose a book, and it was a really stupid book AND shockingly, she threw it at me from across the room. What had happened was that she tried and tried to read, but could not process the words on the page and it was extremely frustrating for her.  She did not make the connection that it was herself that could not process the written word; in her mind, it must have been the book and it was my fault. 

You mother was used to crocheting and it kept her hands busy. She does seem to want to do things to keep her hands busy by asking what she can do to help.  Why not give her a small basket of "laundry" items to fold.  Washcloths, dish towels, socks, and any other items she can manage.  Once folded, the items can secretly be unfolded out of her line of sight for another time for her to do it again. Perhaps she can dust using one of those feathery duster gizmos which will help her to feel a bit of usefulness.

I also found putting together a nice box with a lid and filling it with interesting items kept my LO busy going through it for  an hour or two at a time.  I put in colorful beads, necklaces, bits of lace, some pretty ribbons, a couple of brooches, colorful buttons and other decorative or interesting small items - she loved to go through the items and examine them. Each time she opened the box it was new all over again.

Your describing your mother watching the same TV shows over and over again is another dynamic that happens. Some Members buy tapes of favorite show series to play. If this is highly annoying, you can perhaps put a TV in her bedroom along with a comfortable chair if there is room and it would be less annoying noise for you.  My MIL in her dementia, loved magazines with a lot of pictures; her favorites were mags with photos of babies or brides. I bought her half dozen or so magazines; each time she opened them, it was brand new all over again.  While she could still read, she loved those gosh-awful uber romance books. She had several, and each time she read one over and over and over, it was brand new as she had no recall of having read it before. You get the picture.

Structure and routine are crucial for a person with dementia; change is usually the enemy.  The ever evolving of recall and then no recall, and the persistent bringing up of the same questions or topics over and over are also for many, a common part of the early to mid dementia dynamics.   One way to deal with a broken record sort of dynamic is to learn to refocus her onto something else; a new topic, a small chore, a little snack, etc. 

I am truly sorry for what is happening and it must be hurtful to watch the changes happening to your dear and talented mother.  Do come to talk and vent; we are all here in support of another and we sure do understand and "get it" where the rubber hits the road.  If you can have someone come over to the house to "visit" with your mother, you can perhaps get away for a bit of time to get some respite. I actually hired a lovely woman to do this and introduced her as my friend.  It worked beautifully.

I send warmest thoughts your way from one daughter to another,

J.

Quilting brings calm

Sounds like your mom is at a similar stage to mine.  We can have rational conversations, but usually they don’t stick with her.  So we have the same one about her muscle relaxer for her back  every day. She wants to use it when her legs and feet hurt from nerve issues. No matter how often I tell her it doesn’t work for that. It does however make her drowsy so she thinks it works 

Other times, it’s the repetitive question and answer conversation in a phone call. 

Then there’s the paranoia, the persecution complex ( the other residents and staff at the AL  don’t like me), the anxiety and depression.  She will tell me she and  my stepdad are going to the store or on an outing and then more or less ask my permission 

Since they live at an assisted  living facility, I’m not currently involved in the showering function.  They don’t appear to have an issue with that though. The only issue the facility staff seem to have is with Mom’s anxiety and depression. 

Mom quit crocheting almost 3 years ago.  She couldn’t  follow the pattern instructions.  She won’t even work a puzzle.  Even a 100 piece one.  But if I try to buy simple activities( such as those silicone popper things similar to bubble wrap,  she is insulted.

Just like you and the others who have replied, I find it difficult at this stage to change from attempting a rational conversation to ‘ uh, huh, and then what happened’, ‘ oh. You took a pain pill, well I hope it helps’. I find myself increasingly frustrated. 

brodiegirl

Hi there!!  I am a brand new member and just wanted to give you some encouragement.  My 83 year old mother lives with me and is in the later stage 4 approaching stage 5 of VD.  I am the main caregiver, 2 brothers just visit, and you are where I was 3 years ago.  I have learned to approach each day as a new day.  Lots of patience, understanding, laughs and mostly lots of good old fashion LOVE!!!  I had to put myself in my mothers place to try to understand what she might be going thru.  It is only going to slowly get worse, so get yourself in a good place.  Accept that your mother is not the mother you knew, but know she is your only mother!! I did start my mother on Doterra essential oils 2 months ago to help with mood swings, calming and overall quality of life and it has done amazing things.  I thought for years I was the only one out there dealing with this and never reached out to group like this, but my mother is getting worse and I thought I needed to see what others where challenged with. I could go on and on with all the difficulties I have been thru, but the bottom line is "It is what it is" and God will be there if you just ask him.