Stage 5 Dementia

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.

~ ~ ~ § ~ ~ ~

“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

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.

~ ~ ~ § ~ ~ ~

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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34 thoughts on “Stage 5 Dementia

  1. My best friend’s mother, near the end of her life couldn’t remember what happened the day before. One day we took he to see the movie “Sleepless in Seattle,” which she loved. The next day talking about the movie she stated “I would love to go see it.” So, we took her again, and she loved it, again. The day after, though, we didn’t mention the movie out of fear we could end up in a never ending loop.

    Liked by 3 people

    • Steve, I totally understand your best friend’s predicament. It is tricky to say the least—for exactly the same multiple reasons he took her twice to see a movie she’s “never seen before.” I deal with those memory lapses regularly every single day/night. It can be utterly exhausting.

      Another serious challenge for me is that every day household items get misplaced regularly—it’s a daily scavenger hunt, the refrigerator temp-adjuster is regularly changed (moist produce frequently), the AC/heat thermostat is changed at least 4-5 times per day, plants are sometimes watered 2-3 times per day unless I am around, and then there is the non-stop circus of her daily (AM-PM) medications, complicated by her severe degenerative arthritis in her upper neck in her spine behind the lower ear. For the sake of time and comment-space, I’ll stop here, cuz there’s a lot more I could list. Every day is LITERALLY an unpredictable adventure despite efforts to make daily routines predictable. Ugh.

      I’ll tell you this, I’m going to have to have some breaks, R&R if I’m to change and maintain all these tips above as well as my own sanity.

      Liked by 1 person

    • Thank you Jim very much. ❤️ This is going to be possibly the hardest challenge I’ve had in my life, next to being a Stay-at-home Dad for 18-months with my then infant son and 7-yr old daughter while working a graveyard shift Security Guard from 7pm to 7am six days a week. And I thought THAT would be the last hardest job in my life. HAH! 😄

      Liked by 1 person

  2. This is a terrible disease. My heart goes out to you because it is really hard to deal with how this negatively affects any kind of long term view. That’s the path to depression. I think the only way to get through it and turning it into a really valuable time is framing everything one moment at a time and dealing with only this, to not allow one’s self to think about some later time or waste much needed emotional energy thinking or wishing if things were only different. They’re not. This is unidirectional. So I think it very prudent to understand what’s coming and know in your bones that none of this is intentional, it’s not personal, it’s simply a disease process that has its own timeline. If nothing else, caring for a dementia person is an ongoing lesson of how to live in the moment and find some reward doing so… but without feeling guilty. That, too is really hard. But damnit, sometime you just gotta laugh. So it does have its moments, as I’m sure you know; feed off those if you can and you’ll get through this.

    On the plus side (because you know just how cheerful my disposition ALWAYS is…. well, mostly… okay, on occasion and maybe in spite of my best contrarian efforts), I read today that Viagra (and its generic equivalent) seems to have quite the positive effect on keeping dementia at bay. So yes, THAT’S why the Prof is buying it now: for its anti-dementia properties! Sure, let’s go with that.

    Liked by 3 people

    • BWAAAAA! Viagra, huh? Hadn’t heard/read that. At one time—pre-COVID shutdowns of all things publicly sociable—I had some yellow pills remaining that lasted me until Easter and summer 2021. However, I certainly wasn’t giving them, nor storing them to give to my mother. 🤣

      Tildeb, I do like that wise perspective and advice of ‘living in the moment and finding rewards doing so.‘ That really does seem to work much better with Mom rather than my unintentional, innocent want of “controlling” her environment thinking (mistakenly?) that it would or does help, when more often than not it frustrates both of us to those scowling stare-downs. 😬 Geeezzz, I have much to reform about myself which for 35-40 years was no difficulty at all for Mom; she knew how to manage me fine and lovingly let me be me. 🙄 This is a drastic change, let me tell ya.

      Nevertheless, thank you so much for your kind comment & advice. ❤️

      Liked by 1 person

  3. IMO, there’s little any of us can say that will help make you feel better. However, I do think all of us reading about your situation do sympathize and empathize with you … and hopefully, that will lift your spirits at least a little. ❤❤❤

    Liked by 1 person

    • It really does lift my spirits Nan. Thank you! And as I’ve mentioned once or twice since I started blogging (2011), this is as much a journaling exercise for me as it is attempts to greatly improve my writing composition and skills, both of which were (are?) mediocre at best. 😄

      But seriously, many of you I consider good friends, if it is only via the cyber-WordPress sphere. 🥰

      Liked by 1 person

  4. I feel your pain. My mother is in a nursing home with the 1000 yard stare. It sucks, and that’s putting it lightly.

    I understand your concern with letting the professionals handle your mothers care. My wife has worked in nursing homes (LPN) and I’ve heard enough to know it’s worse than most could imagine. Mostly because the nurses have way too much to handle. Plus there’s always the CNA’s who can never be found when they are needed, they have an uncanny ability to take a break when the SHTF.

    The nurses are overworked, under paid, and under appreciated. If there is a nurse that can get every single thing that has to be done, done on their shift, they are cheating somehow. You can take that to the bank.

    The management as you might suspect is only concerned about maximizing profits. Management is always tipped off to when State officials are coming for inspections. When that happens EVERYONE in office positions all of a sudden start helping the nurses and CNA’s get things done. It’s a freaking miracle! Then just as soon as State is gone, they slip away and hide in their offices again.

    I’ll tell you what I did to help ease my concerns. There is a very small amount of $$ left over from Medicare paying for the stay. Personal account stuff so residents can buy their own whatever. As my mom isn’t buying squat, that $$ piles up and becomes a problem for the bean counters. I told them to use excess $$ in the personal account to get the nurses on the floor donuts/coffee/pizza/ etc. How much it helps I’ll never know really, but it bought me a little piece of mind, and I damn well know the nurses deserve it.

    I’ve already been down much of the road you have yet to travel. All I can say is it hits you hard knowing the person you know and love is no longer home. Enjoy the time you have left.

    Also if you haven’t got Power of Attorney yet, it might be too late. It is essential you get the PoA if you can.

    I’ve been through a lot in my days, I don’t envy where you are headed. Just know you have a brother on the internet. 🙂

    Liked by 2 people

  5. I am sorry to hear this. I can only imagine, as I’ve never had to deal with it. All I know is that I want outta here if I ever develop it. I have no family to care for me or even visit if I ended up with full blown dementia. I’m familiar with nursing homes, when my husband died in one. I will never go to one of those. I will find a way out.

    Liked by 1 person

    • I completely understand Mary. I’m to the same mental-point you are about living past 80-85.

      Having essentially inherited the full entire brunt of dealing with every single daily, weekly, monthly, quarterly, etc, aspect of Mom’s life today and for her (near?) future—as well as her past since 2006 when her husband passed away—I have QUICKLY learned (disturbingly) that LTC healthcare providers and private health-medical insurance companies, as well as Medicare, refuse to pay or help significantly, immediate family members who are and have been lovingly caring for their elderly parent! 😠 As an infuriating consequence, I am forced to put the majority of my Mom’s care into the hands of total strangers who are essentially in the BUSINESS of geriatric living and worse still… pay them (again/more) to legally do so! It all seems like a business racket to exploit my Mom’s generation (b. 1939) who worked extraordinarily hard for these exact “benefits” during her final years. But those said retirement, elderly, healthcare “benefits” CANNOT be implemented by her own loved ones, particularly her own children!!! I can’t receive one cent for her care!

      Seems utterly asinine to me to be FORCED to hand her over to non-family members (strangers) because our U.S. healthcare system is setup for those mega healthcare company’s and their staff to create job-security and to rake in revenues, profit margins, and fat paychecks—and eliminating the possibility of ME helping her… who, by the way, recognizes me and totally trusts me!

      Maddening Mary, just maddening. 😔

      Liked by 1 person

  6. Sucks big time. My father is on this terrible road. He has pretty good memory for events etc from way-back-when, but recent stuff he forgets. Whenever we talk about the garden – most Whatsapp calls – he asks: ”How big is your garden, Doug?”

    For me, being so far away and not in contact every day it’s no biggie but I can imagine it is terribly frustrating for my mother. On the plus side I get to tell him the same corny jokes and he laughs like it’s the first time he’s heard them.

    My folks are in their eighties so …. well, you know, right?
    If Dad is left on his own first then I reckon my sister will whisk him off to France. If Mum is the sole survivor (as the Stones sang) then she will probably join a rock band or even ask Jagger if she can provide backing vocals on the Stones’ next tour.

    I see my New Phone courtesy of Santa Claus is showing a green light( fully charged)
    I shall now sod off and go phone my parents and tell my old man my xmas joke:

    Horse walks into a bar on the 25th December.
    Barman asks: ”Hey, it’s Christmas. Why the long face?”

    All the best Mister D.
    Love and light and that other good shit
    Up the Gunners, yes? Right up em!

    Just for you ….

    Liked by 3 people

  7. I appreciate you putting the stages into a post. I see that my mother is in moderate decline. I’m having inexplicable difficulties, however, in convincing the powers that be.

    Like

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  9. Hello Professor Taboo!
    Nan just shared your journey on Scottie’s blog and I’ve read it through. Oh my. So sad for all concerned. My Mum got (alcoholic) dementia in her late 60’s. She died in her early 70’s of cancer but for months we had no idea whether she knew us or not. She even forgot that she smoked. .which was a relief. Although I cannot empathize (my sister was the one who dealt with her most often) I can certainly sympathize. My grandmother (my mum’s mother) had dementia, Mum (only daughter) had it and guess who’s the eldest daughter? As my uncle keeps reminding me, I’ll be able to hide my own Easter eggs. 😉

    Seriously, though, my heart goes out to you. I wonder how many sons would be so devoted? All the best, Carmen

    Liked by 2 people

    • 😄 Hiding your own Easter eggs. Hilarious! Mom and I joke about how if I’ve said something too directly, too bluntly, too candidly—in pure honesty, of course—that hurts her feelings, which I am known to do infrequently, she laughs later that she can EASILY forgive me and it’s forgotten, move on!!! Hah!

      But in all seriousness, for a Perfectionist like me, who was raised by a perfectionist USMC Marine Dad from a paternal military family throughout… this hasn’t been a cake-walk for me. I’m having to change & modify lifelong personality habits and learn to “let go.” Let the messiness be, so to speak, while rolling with the setbacks. For someone who has always prided himself for being well-prepared ahead of time, THIS is a big big change for me. I sometimes (often?) feel I am not doing enough and can do much better. Frustrating. 🙄 But my sister often reminds me: Dwain, let her be when it’s alright and don’t stress so much.

      Thank you very much Carmen for your comment here and sympathies. I’ll take everything I can get. 😉 ❤️

      Like

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