How can I control my frustration?
I am not completely sure what my husband has. One neurologist classified it as MCI in 2020. In early 2021, his internist told me he thinks my husband has early Alzheimer’s. In June of this year, after moving to another state, we went to a new internist. For the first time, he had a Medicare Wellness check. The indication was “no cognitive impairment.” A week later, the notes from a second internist appointment, it was indicated that he had MCI but that he refuses extensive testing.
His short term memory is bad. One day, he couldn’t remember where the oatmeal was. I told him. After making some, he didn’t remember where he got it. Other days, he remembers. Why?
He cannot remember names of people he just met. It frustrates him. We went to lunch with friends of mine and their friends (we had met this couple once before). The friend of my friend gave my husband a card with his contact information on it. Later that afternoon, my husband asked me who the person was on the card. I told him it was the guy we had lunch with. He said he could not picture him.
He hasn’t forgotten the names of other friends or family members, though.
He is finally remembering our new house number. The zip code is still a problem….
In the middle of the night one night, he woke up and said he could not remember any dates (birthdays, anniversaries, etc.). He had a piece of paper and was writing them down. (He may have looked them up on his phone calendar.) At a recent doctor appointment, he had to ask me the month and year. Other times, he remembers.
Yesterday, we were shopping and I saw a Christmas tree ornament that said, “The first Christmas in our new home — 2022.” I asked him if we should get it. He said, “Yes,” I hung it on the tree when we got home. Today he was looking at the tree and said, “I haven’t seen that before.” I asked him what he was referring to and he read the ornament to me…
He is aware he is having short-term memory issues. He is fully functional otherwise. It surprises me the things he remembers and what he forgets. When things seem “normal,” I tend to forget he has a problem, then I get frustrated and take it out on him, thinking he just isn’t listening or something… He says I am condescending. I hate doing that, but it takes me by surprise and I show my frustration. I wish I knew how to change my reaction….
He recently was diagnosed with Branch Retinal Vein Occlusion. It was not a stroke, but a result of the hardening of the artery and blocking off the blood supply to a vein (from his hypertension). He is being treated for the inflammation. After one visit, there was some improvement. After the second visit, it was worse. So the doctor changed the medication.
I often wonder if this condition and his brain function are related…. — all as a result of his hypertension. His MRI from 2020 showed “scattered white matter consistent with ischemic small vessel disease.” The internist then said it was “normal aging.” I didn’t think that at the time. And I certainly don’t think that now….
He obviously has something more than MCI going on. I just wish I could find a way of controlling my reaction.
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And remember there are more types of dementia than just Alzheimers. MCI can and often does progress, and given his issues with BP control and that fact that he already has one blood vessel issue in his brain, it is likely that he has more.
I'd try to see a neurologist who specializes in dementia, and get him evaluated. That is the first step. Also contact the Alz Association and find out about resources in your area. Every one place or group leads to another one, if you keep asking for help. You can't do it alone. Keep us posted.
My guess is we are in a moderate stage of something. It was the neurologist he went to, after the internist finally referred him to one, who gave him the test and diagnosed him with MCI. She said she couldn’t diagnose dementia without further testing, though she said it will eventually lead to dementia. I keep looking for more signs….
Sign 1: Memory loss that affects day-to-day abilities
Are you, or the person you know, forgetting things often or struggling to retain new information?
It's normal to occasionally forget appointments, colleagues’ names or a friend’s phone number only to remember them a short while later. However, a person living with dementia may forget things more often or may have difficulty recalling information that has recently been learned.
Sign 2: Difficulty performing familiar tasks
Are you, or the person you know, forgetting how to do a typical routine or task, such as preparing a meal or getting dressed?
Busy people can be so distracted from time to time that they may forget to serve part of a meal, only to remember about it later. However, a person living with dementia may have trouble completing tasks that have been familiar to them all their lives, such as preparing a meal or playing a game.
Sign 3: Problems with language
Are you, or the person you know, forgetting words or substituting words that don’t fit into a conversation?
Anyone can have trouble finding the right word to express what they want to say. However, a person living with dementia may forget simple words or may substitute words such that what they are saying is difficult to understand.
Sign 4: Disorientation to time and place
Are you, or the person you know, having problems knowing what day of the week it is or getting lost in a familiar place?
Have you ever forgotten what day of the week it is or can't remember why you went into your bedroom? It happens to all of us. People living with dementia can become lost on their own street, not knowing how they got there or how to get home.
Sign 5: Impaired judgment
Are you, or the person you know, not recognizing something that can put health and safety at risk?
From time to time, people may make questionable decisions such as putting off seeing a doctor when they are not feeling well. However, a person living with dementia may experience changes in judgment or decision-making, such as not recognizing a medical problem that needs attention or wearing heavy clothing on a hot day.
Sign 6: Problems with abstract thinking
Are you, or the person you know, having problems understanding what numbers and symbols mean?
From time to time, people may have difficulty with tasks that require abstract thinking, such as using a calculator or balancing a chequebook. However, someone living with dementia may have significant difficulties with such tasks because of a loss of understanding what numbers are and how they are used.
Sign 7: Misplacing things
Are you, or the person you know, putting things in places where they shouldn't be?
Anyone can temporarily misplace a wallet or keys. However, a person living with dementia may put things in inappropriate places. For example, an iron in the freezer, or a wristwatch in the sugar bowl.
Sign 8: Changes in mood and behaviour
Are you, or the person you know, exhibiting severe changes in mood?
Anyone can feel sad or moody from time to time. However, someone living with dementia can show varied mood swings – from calmness to tears to anger – for no apparent reason.
Sign 9: Changes in personality
Are you, or the person you know, behaving in a way that's out of character?
Personalities can change in subtle ways over time. However, a person living with dementia may experience more striking personality changes and can become confused, suspicious or withdrawn. Changes may also include lack of interest or fearfulness.
Sign 10: Loss of initiative
Are you, or the person you know, losing interest in friends, family and favourite activities?
It's normal to tire of housework, business activities or social obligations, but most people regain their initiative. However, a person living with dementia may become passive and disinterested, and require cues and prompting to become involved.
And one more sign to be aware of: Challenges understanding visual and spatial information
Thus any information which is important needs to be managed in a way that doesn't depend on his being an active participant. And then you won't want to help straighten his tie extra tight.
Only... ischaemic small vessel disease is not at all the same kettle of fish as normal aging. Can you go back to that internist with his two divergent answers and say "excuse me?"
Is he diabetic, too?
Rather than trying to CONTROL your frustration, consider healthy ways to RELEASE the frustration. I know you are a long time caregiver of family members and have managed other stressful situations but the anger and frustration can build up and come out inappropriately if it isn’t dealt with as you go along. Think of it as foundation for the coming years. You will do better to be proactive in managing the stress. Good to hear from you.
It is always good to get some feedback from this group. I really appreciate it
A person with dementia has very bad short term memory while his long term memory can be totally intact.
I suggest you read this 33 pg booklet which has the best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
Here is a list of useful tips from her e-book I found to be excellent:
The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience
The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment
Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently
Care Needs
· Recognize that receiving personal care feels intrusive
· Reassure with your tone and manner
· Do one thing at a time
· Talk through the care “play-by- play”
· Be aware of your body language and use it to communicate relaxation and reassurance
· Be sincere
· Use a soft, soothing touch
· Be aware of the individual’s unique triggers
· Be aware that a person with dementia may not accurately judge whether a situation is threatening to them
· They may respond to fear, pain or anxiety by defending themselves with what we call “aggression”
· If they become distressed, stop immediately and allow them time to calm down – don’t try to restart the activity right away
You need to change your behavior to adapt to the dementia because the person with the disease cannot.
You need to get respite for yourself to recharge your batteries, too. Realize your dh can't help his memory issues, he's doing the best he can.
Best of luck.