What you have expressed about your emotions and frustrations about taking care of your Mother who suffers from dementia, I've heard so many times before.
By Jennifer Scott
This was written in response to -- Alzheimer's Caregiver Lament -- I Can't Get a Second to Myself.
One of the common behaviors associated with someone who is diagnosed with Alzheimer's is to develop what is called "shadowing" behavior. Everywhere the caregiver goes the person follows. It becomes difficult for the caregiver to even get a few free minutes to take a shower or drink a cup of coffee.
The person with Alzheimer's becomes dependent on environmental cues to tell them what they are supposed to be doing and for a feeling of safety. The caregiver becomes an "environmental cue with legs" and if they are gone from site for any length of time all of a sudden the person with Alzheimer's looses their sense of safety. Since they lose their sense of "time" a five minute interval of not seeing their caregiver will feel like an all day event and no amount of convincing them that you were only gone 1 or 2 minutes will convince them otherwise.
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I have few suggestions; Bob's idea of rearranging the furniture is a great one and should be tried.
I also suggest compiling "busy boxes" with items that you can access quickly and easily. You can give the items to your Mother just before doing your chores or whatever the case maybe and the items might hold her attention for a short period of time so she doesn't miss you or look for you quite as quickly.
Items for the box could be wrapping yarn if she used to knit, the newspaper (if her hometown still produces a newspaper you could subscribe to it and have it delivered to your house), photo albums (it works best to compile several small photo albums with a few pictures each so if they lose interest in one they can move to another one and make sure all the pictures are from years ago not recent ones), old letters or note cards, small quilt samples, and so forth.
Try to amass items that used to interest you mother. There is a great magazine called REMINISCE that has articles from yesteryear and it is written for people who have memory loss. This magazine might hold her interest for quite a while, it is filled with pictures and stories from the years gone bye.
I also suggest, if you belong to a church or other organization asking for volunteers or friends who can commit to coming by for a "visit" at set times a couple of times per week. The "visits" don't have to be very long, 30 minutes and if they are scheduled you can plan for some alone time. You can set the visits up to be fun, like having tea with the neighbors or bible study, etc. If you have other family around and they are willing to help, you can set up a care calendar with them for the "visits". Many times the primary caregiver doesn't ask for other family members to actually commit to a certain time to help.
As for you mother not acknowledging the fact that she has Alzheimer's or acknowledging the fact that she needs help; this is also extremely common and can be frustrating for the caregiver.
Alzheimer's causes a phenomenon to happen, usually fairly early in the progression which is called "anosognosia" which is from the Latin term which means Agnostic. The true definition of "agnostic" is "to not know". So the "anosognosia effect" on the person is that it causes the person to think and really believe that they are functioning completely normal without any problems what-so-ever. They think they can still live by themselves, drive their cars, they don't take any medicines because they are healthy, and they certainly don't believe they need help.
The "anosognosia" effect takes away their own ability to be able to evaluate their own skill level and this sets up huge power struggles with the caregiver. So the caregiver is challenged with making things seem like it is the person's idea and doing everything they can to not argue or try to convince them that they are wrong.
It takes two people to argue and the caregiver has the ability to not argue where the person who has Alzheimer's will not have the same amount of self control. I have found it most helpful to say things like "you are right, you don't need help but I will feel better if I help you"; things like that but with as few words as possible. Too many words causes confusion.
As for the negative "words and attitude", you will have to let this kind of roll off your back. Her ability to comprehend "negative words vs positive words" may be very diminished and Alzheimer's causes the person to lose the ability to have empathy in relation to others in the same way you and I can understand that our words and actions effect others either positively or negatively.
The negative behavior is generally not a purposeful behavior but for some folks it is a long term habit of negative thinking. Where they used to have the internal filters and control to not say the first thing on their mind they now don't have those filters and you never know what might come out! Examples of this are people beginning to use curse words when they never have before in front of their loved ones and now they use very colorful language.
Rapid changes in her mood, going from happy to sad to angry in a flash of eye can be very difficult to understand. It is called "labile" behavior and it is a loss of emotional control. The key here is to match your response with the emotion that she is exhibiting. She may not realize that she is acting like she is "angry" or "sad". So if she is "angry" about something you can say "I'm sorry I made you angry" or "sorry that made you angry I'll make sure that doesn't happen again" (I've accepted responsibility for many many many things that I had nothing to do with over the years but at that moment you can see the person's face lighten and the "mood" will change.
The labile behavior is not necessarily caused by anything in the environment it simply causes rapid mood swings. There are some medications that may help for mood stabilization.
I am not an advocate for use of medications unless absolutely necessary. It is not comfortable for the person who has Alzheimer's to go through their days angry, upset, anxious, or frightened. If it was me who had the illness and if everything else my family has tried to help me live in good moments has not worked and I was still anxious most of the day and night and frightened...I would tell the doctor "give me something...I am miserable".
I hope this information helps you and your mother along your journey.
Jennifer Scott has been in healthcare since 1984, working with a variety of people with disabilities. She has delivered numerous speaking and educational presentations about Alzheimer’s disease and how to care for those suffering with dementia.
- Alzheimer's Disease and the Five Stages of Grief
- What’s the Difference Between Alzheimer’s Disease and Dementia?
- What is Alzheimer's? What are the Eight Types of Dementia?
- Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Disease Patients
- Is it Really Alzheimer's Disease or Something Else?
- Ten Symptoms of Early Stage Alzheimer's Disease
- Ten Tips for Communicating with an Alzheimer’s Disease Patients
Original content Jennifer Scott, the Alzheimer's Reading Room