NightOwl Asked April 2017
How do I deal with my mother's shame?
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I feel she has nothing to be ashamed of, but she sees the dementia as embarrassing or shameful. She has only mild dementia, but is experiencing some mis identification of my father. The doctor thinks it's REM sleep issues. So 90% of the time she's fine, but 10% of the time she doesn't know my dad, is afraid of him, or mad at him. I hate to move her and change her whole life for this 10% problem. The doctor has offered no help as far as meds, and discouraged her use of xanax. She barely had 3 pills and it seemed to be helping. Now what do we do? If she was bad all the time it would be easier to make a decision.
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Many doctors are now often afraid to prescribe what their patients need because they are afraid of having their own record questioned. Another doctor may not have this concern if he/she knows it is needed. I don't think worrying about addiction should be a concern in your mother's case, particularly if she took the sedative only when needed.
Try to keep track of the time of day your mom is becoming agitated. Many folks have what is called sundowning--particularly bad bouts of agitation and delusional thinking at a certain time, often at the end of the day. If there is a pattern, meds can be timed to " get ahead" of the symptoms.
I've been told by several geriatricians and geripsychs that xanax is not a great drug for elders; another reason for your mother to consult with a specialist. She deserves relief, and good, appropriate care.
It very much sounds like her doctor's actions are at least in part driving her shame. The implicit message is " no meds for you, your symptoms are your fault and you should be able to overcome them without drugs". Her brain is broken! She needs meds to fill in for what is no longer working!
1) I can only say that some people readily accept the diagnosis because they are relieved to find out that there is a cause for their forgetfulness or change of behavior. Others find it hard to accept because they think that people will think of them as eccentric, crazy or just stupid. Sounds like your Mom falls into the latter category. You may have to sit down with a doctor or trusted friend and suggest that they explain that this is a disease, just like a malfunction in your kidneys or muscles. Nothing that they did caused this or could have prevented it; it just happened. So many malady's are freely discussed in today's society. Just look at the commercials on TV - I just saw something for enlarged prostates! If we can talk about that, surely we can talk about something as common as dementia.
Once you let people know that you have dementia it will lift your fears. My wife used to often introduce herself and say: "I have Alzheimer's so if I repeat myself, please forgive me." Try it, It works. It will take the burden off of your Mom and give her an even playing field.
2) Is sleep disruption a symptom of dementia or is the memory loss and confusion a symptom of sleep deprivation? That is part of what makes diagnosing this so difficult. Some of the symptoms of dementia can also be caused by something as simple as an Urinary Tract Infection (UTI) or side effects of other drugs such as long term use of sleep aids such as Ambien. It is so difficult to tease these apart that I suggest that you work with a specialist - a neurologist that specializes in dementia - or a geriatric specialist that deals with dementia - they can weigh options, check medication interactions and perhaps prescribe others.
3) My wife often misidentifies me. It hurts, make no mistake. But I usually just leave the room, count to 10 and reenter with a big "Hi Honey" (or use some pet name that they call each other). That little time and subtle reminder will allow her to 'reset' her memory. Often times simple 'redirection' works - if she is getting upset quickly change the subject or call her attention to something else. Are there specific triggers that set off her anger or fear? I would need to hear more about the situations to offer other suggestions.
One last general suggestion - find a good support group for your Mom and Dad so that they can talk to others that are on the same journey and discover that they are not the only ones to experience these things and can learn from others.
If you are comfortable doing so, filling out your profile a little more will help us get to know you. Are you in the US? Do you have any profession connection to health care or caregiving?
As far as the redirection for anger - it works best if you can catch the anger as it is blooming or fading - but once it is loosed, the best way to deal with it is to agree with your Mom. It doesn't matter if what she is saying is wrong or saying something unbelievable, just agree. Don't bother with logic it won't work. If possible take on some blame yourself, be humble, apologize and then try to move on. For example (and I could give you hundreds) when my LO was upset that someone had stole her black pants (and even though I tried to show her the pants - logic - she knew that they weren't hers and someone stole them) I realized that it was best to acknowledge that they were missing, they were important to her, apologize for putting them out where someone could take them, and I told her I would get a new pair. Depending on the degree of anger, it may take a while to defuse, but agreeing and joining them will help cut it short.
The other way out is ask them to tell you about whatever is causing the anger. If they think someone has cheated them or lied to them, sometimes it helps if you can let them talk about it and use something they say to redirect.
Example (shortened version): My LO: When we were in the department store they charged me the wrong price.
Me: Really? Do you have the receipt?
Wife: Yes - look - it's wrong
Me: Oh no - you're right - we will have to be more careful. I'll take it back tomorrow and get the right price. I'll talk to the manager if I have to. I'm surprised that they would do that. That's Ruth's favorite place to shop. By the way, did I tell you that Ruth called and said....
Personally i have to take Amiodarone which has a very extensive list of side effects some of which include confusion and hallucinations. Fortunately i haven't experienced this but am becoming more forgetful and the two worst are hypothyroidism and shaking often uncontrolably. Sometimes the cure is worse than the disease.
As far as Mom's shame is concerned, she is of an age where any kind of mental instability was thought to be a weakness on the part of the patient, or worst yet that they were imagining it.
it is very important for Dad to totally understand the disease so he can be really supportive and not be hurt by any of the events.
She does not have to announce to the world that she has dementia it is sufficient to say that her senior moments are getting more frequent so would the person mind reminding her of......................