As some of you know, since at least the Spring and Summer of 2018 my sister and I have been trying to manage from near and afar our Mom’s progressing Dementia. Sister and I both agreed then, since then, and especially last Aug. to the present that Mom’s cognitive capacities have noticeably declined, apparently significantly into Stage 5… and approaching Stage 6, if she isn’t already there.
What are the stages of Dementia? It seems the general consensus is as follows:
Stage 1: No Cognitive Decline/Normal Behavior
Parents in this stage show no obvious signs (yet) and appear to function daily with no issues.
Stage 2: Very Mild Decline/Forgetfulness
During this stage of dementia, your parent might innocently forget things such as names of others, of places, and events. Things are more frequently misplaced around the house, familiar objects such as keys and phones. But, not to the point where you can’t tell normal age-related memory loss from serious memory deterioration. These symptoms are not noticeable to other people.
Stage 3: Mild Decline
At this stage family members begin to notice subtle changes and signs that “something is off and not right.” Parents in this stage tend to be more regularly forgetful than ever. Your parent might begin missing several doctor’s appointments or social meetings. These tend to happen more frequently. They also have difficulty finding the right words to say if you’re talking to them. If dementia patients still work or do home chores, you’ll notice a decrease in work performance and they usually find it hard to focus or concentrate. This stage can manifest from 2 years and can last up to 7 years.
Stage 4: Moderate Decline
In this stage of dementia, the signs and symptoms become visible to everyone. A parent suffering from this stage struggles to count their money right or manage their finances like how to pay bills. This stage happened acutely to my mother this past June thru August. Not fun at all. Also, your mom may have a hard time recalling what she had for breakfast, any recent or other past events. Dementia may prevent a patient at this stage from traveling alone to new places. Otherwise, they will easily get lost. This is now real for sister and I and has sadly happened to me with her this past October. Completing tasks is also a struggle as they cannot focus their attention.
Now for my Mom’s Stage(s)…
Stage 5: Moderately Severe Decline
People affected in this later stage may need more help in their daily living activities like taking a bath or using the toilet or dressing appropriately. Mom isn’t at this full stage for the moment, only about half or more of the symptoms/behavior are present. But parents in Stage 5 forget facts about themselves, such as their address or phone number, possibly even their own name (not Mom). They are also unable to know what time or date it is and cannot tell where they are—definitely where Mom is at now. But, they can still recognize close family and friends or recall childhood memories. This stage lasts around 1.5 years. Mom then, would be nearing the end of these 18-months.
Stage 6: Severe Decline (Late Dementia)
During these later stages, parents suffering from this illness need frequent-to-constant supervision at home. Mom is essentially at the start of this stage. Your parent might need help with day-to-day living activities like washing, eating, or dressing up. It’s also worthy to note that dementia patients may now suffer from incontinence at this stage—fortunately right now, Mom does not. They frequently forget the names of family members, recent and major events in the past. She is not to this point.
Your parent may start to lose language already, trying to find the right words to say. Mom struggles with this every day now. Also, people under this stage suffer from personality and emotional changes, delusions, compulsions, and anxiety. Mom has a few of these manifestations. They may become violent and aggressive which can be upsetting and difficult to cope up with if you are caring for them—fortunately Mom is not at all acting out. Although they might be very confused, they can still recognize the people closest to them like family, friends, or relatives. This stage can last for about 2.5 years.
This is the stage my sister and I dread most…
Stage 7: Very Severe Decline (Late Dementia)
At this final stage, many parents need 24/7 care and support from professional caregivers to help them in their daily living conditions. This scares the ba-JEBUS out of me, if I’m honest. I don’t completely trust strangers with my Mom in this stage.
Seniors living in nursing homes may already experience severe loss of motor skills like walking, and caregivers are the ones feeding them. A parent in this late stage cannot clearly speak anymore or words become unintelligible. So hand or body gestures may be their only way of communicating or none at all. More often than not, many patients die before they even reach this final stage due to other health complications or conditions. This stage can last from 1.5 to 2.5 years. This MUST be the most devastating stage for children to witness and endure. I am not the least bit interested in coping through this phase… so I’m preparing now.
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“Adapt or perish, now as ever, is Nature’s inexorable imperative.”H.G. Wells
After much research, reading, and consulting with professionals and children with the same parental disease, I’ve learned that Mom shows most of the signs of “Mixed dementia” coupled with Vascular and Lewy-Body dementia. The hardest things I’ve struggled with these last 4-months living with Mom as her full-time caregiver are:
- Patience — this is by far the hardest adjustment I’ve had to make with Mom. She used to be quite sharp, witty, usually on her toes, if you will, expressing herself well, even vividly when she felt the need to. Now it seems it is the opposite. I must remind her several times a day what’s going on, who that person is (their name) outside walking the Senior Community complex for exercise—something I really struggle motivating her to do as well.
- Misplaced or Lost Items — this is a daily mystery and scavenger hunt. In trying to start routines, always having needed daily house items in the exact same place every single day, this turns out to be one of the most frustrating exercises we go through. Some days it is maddening and I feel as if I’m about to lose my mind… and patience. Ugh. And perhaps the HARDEST of these now:
- The Right Words and Phrasing for Her — I am having to drastically change my communication style (in the normal younger world) to what Mom requires. I have always been direct, candid, very honest, unusually concise with my thoughts, feelings, intentions, etc., because my last 30-35 years in relationships—particularly with women, family, many friends of both genders—has painfully and in folly taught me how astoundingly critical good-to-excellent communication is and not a hit-n-miss ordeal. On the contrary, it is vital in avoiding undue harm, confusion, and further exacerbated problems from poor/short and vague communication. Some of you in our WordPress circle know or can imagine how incredibly challenging this is for me. HAH!
I have had to overhaul these personal habits, formed over some three decades, into another personality I am quite alien to and doing it like a bumbling idiot. Yes, more frustration, but it is internalized frustration! I cannot ever intentionally, in stubbornness make my Mom’s final years a frequent battle where I am her combatant. I’d never be able to live with myself if that happened. Hence, my own personal issues, lifestyles, social desires, and mid-term/long-term plans MUST be shelved indefinitely, as Mom’s condition worsens to a point when I have no choice but to adapt again… or perish, as H.G. Wells appropriately puts it.
Below are ten important tips to talking (and not talking) with your parent suffering from progressive dementia. I’ve managed to find these pointers from Wingate Healthcare, a Senior Health and Residence provider specializing in geriatric diseases and assistance. I’m happy I did. They drive home how little I knew about living with severe dementia. I’m humbled and have much work ahead.
Living with and learning intimately Mom’s new intensive needs these last four months, I’ve come to a stark realization of just how much I must change and remove, reform, and greatly refine my care for her. If this wasn’t a serious challenge already, at the moment I will not be getting any significant assistance with her. With our Texas courts reopened this past September after an entire year of COVID-19 shutdowns, my sister’s late 2019 felony drug-possession hearing was finally finished by the Kerr County judge. The timing is not ideal in the least. He has made her 3-year probation hectic with multiple regular “societal paybacks,” random urine tests, and P.O. visits biweekly she must by law fulfill or else return to prison. Sister is also a Halfway House Mother with 7-8 ladies (outpatients) in residence arriving from inpatient A&D rehabs. This encouraged the judge to reduce her probation down to three years instead of five. Therefore, despite her sincere Springtime hope earlier this year to help take care of Mom, at least part-time with me if not more, now it is made impossible. She can barely come to see Mom and help more than twice a week for only 2-3 hours or less.
It all once again, falls completely to me. These various events have been overwhelming. I am being forced to
overhaul adapt to these new life-altering care lessons for Mom’s Stage 5 Dementia. Eye-opening is probably an understatement. Soon to be 59-yrs old, several of these ten tips for me have been very challenging habits to tweak or stop all together.
How to Talk to Your Parent with Severe Dementia
- Don’t ask your loved one with dementia, ‘Remember when…?’ This can be a frustrating and painful experience when you ask your loved one and he or she struggles to jog his or her memory. It’s better to lead the conversation with “I remember when…” instead. Wouldn’t it be great if he or she can search their memory calmly without feeling embarrassed? Don’t force it if the person starts to get confused. Just change the topic if they feel agitated.
- Don’t say ‘I’ve just told you that’ or ‘You’ve asked me that already’ Saying these phrases only reminds the person of their condition. Don’t think that words aren’t hurting them inside. Besides, there’s no sense passing your frustration over repetitive answers or questions to somebody with dementia. Try to be polite or respectful and patient when you talk to your loved one who has dementia. It’s crucial that they feel understood and listened to.
- Don’t remind your mom or dad of the death of someone or a pet. If your parent says they just talked to Aunt Jane, whom you know died some 15 years ago, don’t convince them this wasn’t possible. Go with it, just don’t argue anymore. It’s advisable to avoid disagreeing with trivial things. Why? Because you may remind them to relive the grief or pain of losing someone again.
When your parent asks for somebody who passed away, it’s better to come up with another reason behind their absence. Remember, always be sensitive enough to gently remind them depending on their condition. It’s so much better to address the emotion behind this, maybe the person is feeling worried and needs to feel reassured. You can say, ‘Tell me about your sister Jane’ is a good alternative response. Don’t disagree or agree, just let it be. This reduces distress and also treats the person with respect by acknowledging their beliefs and feelings.
- Don’t tell them ‘You’re wrong’ or ‘That’s not right’. We can’t stress this enough but you should not disagree or argue with a person suffering from dementia. Admiral Nurse Emily Oliver of Dementia UK’s consultant, explains that this technique is called ‘validation therapy‘. It helps people talk to persons with dementia with more empathy and understanding by emphasizing emotions instead of facts. It’s important to remember that what they are feeling, experiencing, or saying is validated – even if it’s not the reality.
- Don’t use long and complex sentences. It’s best to use short and simple sentences as much as possible. Long and complicated ones can be hard for them to understand. It confuses them even more. Their cognitive abilities slow down and it’s difficult for them to process several ideas all at once. Moreover, avoid speaking fast and in loud environments, it’s good to wait until you have the person’s full attention before you start conversing with them.
- Don’t ask ‘What did you do this morning’ or ‘How was your day?’ Don’t pepper open-ended questions like this to people with dementia . It can be stressful for them if they can’t seem to find the answer. So it’s best to avoid asking them. Questions that are answerable by yes or no or with more defined options are way better. Instead of asking ‘what would you like to have for breakfast’, you could suggest, ‘Would you like a cup of tea or coffee?’. Try asking ‘Do you want to wear this white dress or this blue one? You’ll be amazed at how easy they’ll be able to answer compared to hanging questions.
- Don’t call them ‘dear, honey, love’ or anything other than their name. Dementia patients are still human and they are emotional beings, though sometimes trapped in a vegetative state or seem to be robots. Calling them by their own name keeps their dignity intact. It shows that you respect them despite their condition and it helps in their concentration and memory as well. So skip using words like ‘love’, ‘honey’ and ‘dear’ that patronizes people living with dementia. Don’t talk to them using ‘elderspeak’ which can cause seniors to feel uncomfortable, infantilized, and pitied. These words may sound condescending rather than a term for endearment.
- Don’t ask your parent, ‘Do you recognize me?’ While it can be frustrating when your parent with dementia doesn’t recognize you…just imagine how stressful it is for them. When you ask the person that question, it can make them feel guilty if they can’t remember, or offended if they do. You may want to avoid sudden bursts of emotions that might get them upset over something they forgot. It may help if you try to say your name and hug them instead. It’s also worth taking note to make sure you have eye-to-eye contact whenever you talk to your parent, as this establishes sincerity and trust.
- Practice “Listening,” a long time if necessary! Let your loved one express his or her thoughts and feelings, don’t interrupt them at the spur of the moment or while they talk. Just let them take their time and listen to them intently. Find out the emotions behind his or her agitation. Dig deeper into why he or she is upset, and do calm them by redirecting their attention to other things. But don’t force it, take a break and then try again after a good 10-15 minutes to take their mind off of the previous subject matter.
“Listen more than you talk. A good idea in almost any situation and particularly useful when with your parents. How will you know what is bothering them (and making them stubborn) if you don’t listen, no matter how trivial the conversation? They may be trying to tell you something without telling you. Sometimes you’ll have to read between the lines.”—Trick and Tips For Dealing with Stubbornness In Seniors, Assisted Senior Living.
- Smile often at people and parents with dementia. “The smile! Without a single spoken word, smiling speaks volumes. Our facial expressions convey emotions and feelings that transcend language. Regardless of where you’re from or what language you speak, a smile is universally understood.”—Elaine C. Pereira, MA OTR/L CDP CDC – author, speaker, certified dementia practitioner, and caregiver.
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Not all ten tips are easy to implement in a night, are they? During these last two years and more so last 4-months, I’ve learned I am by no means alone with this sort of parental dynamic. In fact, the U.S. has one of the largest geriatric populations in the world by comparison. The support networks are available. One is right here in Kerrville. I am utilizing them for sure. I must in order to maintain a stable demeanor and sanity. Hahaha. 😉
I hope some of this post, information, tips, encouragement, do’s and don’ts, may help others out there to cope as best as family members can with this/these diseases: Dementia and Alzheimer’s. That’s my hope anyway, not just to vent or whine. Let me know if you can relate, or might be in a similar situation with your parent(s). Maybe we could swap ideas and tips, yes?
Live Well — Love Much — Laugh Often — Learn Always
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