advice – My Alzheimer's Story

Yes, holidays are special times, but they can also be stressful on many people, particularly people who find themselves alone, or people who live with dementia.

Here are 10 simple “visitor do’s” from dementia care pioneer Teepa Snow for those who might not be accustomed to spending time with someone with dementia but who will be visiting during the festive season:

Start with a smile and a handshake
Introduce yourself by name, even if you think the person with dementia knows you well
Use short phrases; pause between thoughts and ideas
Talk about old times
Talk about happy events and memories (say “I remember,” NOT “do you remember?)
Accept general comments, don’t delve too deep
Be prepared for repetition
Do something with the person instead of just talking
Go with the flow of the conversation
Stay calm

Share this link or download Teepa’s tips below, and send them to your holiday visitors BEFORE they arrive for their visit. The PDF includes 10 tips for people with dementia as well as 10 tips for care partners; it’s a great resource. Also, Teepa’s Holiday GEMS will help you better understand how to engage your loved one with dementia wherever they are in the disease process. You can also download the GEMS(TM) PDF at the end of this post.

Besides these great Teepa Snow tips, here are 10 Festive Dementia “Don’ts” from MyAlzheimersStory:

Don’t argue. Ever.
Don’t ask if they remember you
Don’t be disappointed if they don’t recognize you
Don’t ask them if they remember specific people, things or events. Instead, talk about the people, things or events yourself and let them join in
Don’t treat them in ways you wouldn’t want to be treated yourself
Don’t exclude them from activities
Don’t talk about them as if they aren’t there when they’re right there beside you
Don’t pity or patronize them
Don’t forget they are people just like you
Don’t focus on what they can’t do; celebrate the things they can

These tips work anytime; you can use them all year round.

Here are the download gifts from me to you:

Merry Christmas!

https://myalzheimersstory.com/2015/12/23/an-alzheimers-dementia-christmas-story/

https://myalzheimersstory.com/2017/12/06/santa-claus-lives-with-dementia/

https://myalzheimersstory.com/2017/12/29/im-glad-christmas-is-over/

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Care Partnering, Life & Living, Love, Toward better care

an open letter to those who think they know better

May 29, 2016September 20, 2016 My Alzheimer's Story

Dedicated to unappreciated care partners worldwide. Thank you for all you do.

Dear random person who sees my care partner from time to time and feels the need to point out s/he has bruises all over her/his body that look frightening and s/he has really declined a lot since the last time you saw her/him and s/he can barely walk anymore and s/he’s asleep when s/he should be awake and sometimes vice versa and you hardly recognize him/her as the person you used to know and you’re really shocked and feel bad seeing him/her like this and isn’t it sad and a shame and this is what you would or wouldn’t do if you were me and you would rather be shot than end up like this,

Yes; I know. I know what you think.

But you know little of me and/or the situation in which my care partner and I find ourselves. You think you do, but you don’t. Pretty much the only people who get it are those who have been through it, and you clearly haven’t otherwise you wouldn’t say the things you do and I wouldn’t need to write this letter to you.

I either live with my care partner or I visit her/him almost daily. I spend endless hours and fleeting moments with him/her talking nonsense and singing and just being together, because one day soon s/he will be gone. Every minute with him is torture; every second with her is precious. I know by the way s/he rocks back and forth when s/he wants to get up and get moving, and by the look on his/her face and the feel of her/his hand in mine if s/he is able to stand unassisted. Mostly s/he’s not, so I am by her/his side whenever I can be. When s/he is able, we shuffle around wherever we happen to be to get some exercise.

I know by the way she pats her hair that she loves the fact that it’s “done.” I know the colour and brand of her nail polish because I supply it. I know when she had her last manicure because I was the one who gave it to her.

I know by the way he touches his face that the cut just above his left brow worries him. I know the kind of aftershave he prefers, so I buy it to help him know he’s the same man he used to be: the man who was and still is the love of my life. I know by the way he reaches out to me when I’m near that my presence is important whether he recognizes me or not.

I know when his/her sleep is unnatural by the slackness of his/her mouth and the rhythm of his/her breathing. It breaks my heart that s/he is being medicated for normal behaviour which could be addressed and resolved without drugs. I can’t change that; I would if I could.

What I can change is a soiled adult brief, and I do so often. No one showed me how. I figured it out myself, just as I’ve learned everything else I wish I’d never had to learn about being a caring partner to someone who lives with dementia. I didn’t asked for this. I never wanted it. But here I am. What can I do?

I recognize her wheelchair by the stain on the seat. When she can’t feed herself, I help her to eat like she helped me when I was a baby. When she’s able to eat by herself, I celebrate a small victory. I help her engage with her shrinking world, not simply exist in it.

I see her/him in ways you can’t even begin to imagine. We are reflected in the mirror of each other. I have cried with her/him, comforted her/him and felt the sting of her/his acid Alzheimer’s tongue. I pray for her/him to stay and go. I watch her/him look death in the eye and grab life by the horns every day despite her/his illnesses. I am her/his cheerleader, her/his advocate, her/his voice. I am her/his child/parent/spouse/sibling. Our souls are linked; our destinies are intertwined. We are more deeply connected than we have ever been.

Who are you? You are a casual observer making ill-informed assumptions and coming to erroneous conclusions based on incomplete information. You mean less than nothing to me. My care partner means everything to me. I have experienced first hand the effects of decisions I’m told are in his or her best interests, but which in reality have little or nothing to do with her/his health and well-being and everything to do with convenience, reducing costs and conserving her/his wealth for someone else’s use once s/he’s gone.

The effects of the decisions in which I have no say include the cuts, bruises and other conditions about which you feel compelled to apprise me. Your thoughtless and insensitive comments add salt to other wounds you cannot see. You don’t know me. You don’t know my circumstances. You don’t know my parent/spouse/sibling/child although you may think you do, and because you think you do you also think you have a right to judge me or her/him or the situation in which we find ourselves.

The next time you feel tempted to comment, judge, berate or advise me on aspects of my care partner’s condition or my role in her/his life, please consider all of the above and mind your own business instead of mine.

I don’t need or want your judgment or your unsolicited advice.

Regards,

Unseen and unheard care partners worldwide

P.S. to all the beautiful friends and acquaintances everywhere (especially those in online support groups whom I may never meet or know personally) who support without judgment and share their wisdom and experiences without expectation: thank you, I love you and I am so grateful you are here to hold my hand ❤

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Copyright: bialasiewicz / 123RF Stock Photo

Advocacy, Challenges & Solutions, Toward better care

don’t give advice to people who are drowning

February 18, 2016March 21, 2019 My Alzheimer's Story

It’s clear to me that a lot of the advice offered to dementia care partners is given by people who have never cared with/for someone who lives with dementia and/or who don’t appreciate the challenges care partners face.

If they did, they wouldn’t make some of the suggestions they do. “Ask for help,” is a tip I’ve found on just about every Alzheimer’s dementia care website I’ve ever visited.

Imagine this:

A woman wades into the sea. She walks out from the safety of the beach. Suddenly the sea floor drops off and she gets caught in a powerful current. She starts to drown. People on the beach notice. A crowd of onlookers gathers at the shoreline. The crowd includes several lifeguards. Everybody watches as the woman drowns. “Call for help! Call for help!” Some of them yell at her, but no one, including the lifeguards, does anything. No one steps into the water. No one tries to save her. No one tries to help her save herself.

Ridiculous, right? A drowning person doesn’t need to be told to cry for help; she needs someone to throw her a flotation device. Even better, teach her how to swim in a strong current before she goes into the water. Most of us know when we’re overwhelmed. Most of us are sensible enough to reach out before we go under. It’s instinctive to call for help when you’re drowning.

Yes, there are exceptions. Denial, pride, the mistaken belief they can do it alone, the fear of being a burden, or the “frog in the boiling water” syndrome may stop some carers from reaching out to friends and family. My experience tells me that’s not the rule. Online caregiver support group posts and comments are replete with rants about family members (siblings in particular) who ignore repeated requests for assistance.

“I’m going crazy here, and they won’t lift a finger,” tired and angry care partners complain.

Unbelievably, some family members make care partnering even more difficult than it need be. Besides refusing to pitch in, they may, among other things: withhold financial support, accuse care partners of being freeloaders, sabotage a care partner’s efforts and purposely act against the best interests of both the person with dementia and the care partner. War ensues.

Positive approach to care pioneer Teepa Snow says four in five families are torn apart in the aftermath of a dementia diagnosis. That’s frightening. Especially if your family is one of the four in five statistics. Conflict adds to the stress that results in care partners getting sick and even dying before their time.

Research shows an estimated 14.7 million family caregivers assist 7.7 million older adults who live in the community rather than in institutions like nursing homes in the United States alone. Research also shows that “compared with people who didn’t offer medical support, caregivers who provided substantial assistance with health care were 79 percent more likely to experience emotional difficulty and more than twice as likely to experience physical problems themselves as well as financial difficulties.”

Care partners turn to social and government services for assistance; they are frequently disappointed. The service providers are often understaffed, difficult to access, and/or poorly designed. Furthermore, so-called “professional” staff may not have the knowledge or training to properly support dementia care partners in ways that are useful, practical and healthful. They’re lifeguards who don’t know how to swim.

Primary care partners in North America, the United Kingdom, Australia and New Zealand decry the dearth of resources available from government healthcare and social systems, which seem in many cases to be broken. Care partners know they need help. In some cases they’re screaming for it as they sink below the waves. If they don’t have the support they need, it may be because they have stopped asking out of frustration. They give up, and then they drown.

The irony is that small things can make a big difference. In a nutshell, here’s what anyone from individuals to organizations can do: find out what care partners need, and then supply it. For example, an individual might offer to:

Take the person with dementia on an outing (lunch, dinner, coffee, tea, bowling, etc. whatever they are able to still do and enjoy). Repeat as needed.
Bring over a potluck meal and eat together. Repeat.
Spend time with the person with dementia doing an activity they enjoy while the caregiver has a few hours of respite. Repeat as needed.
Stay with the person with dementia for several days to give the care partner without dementia some a break. Repeat.

One of the best things anyone can do is give care partners time away from their care situations. They need breaks. They need respite. On a larger scale, service organizations could find ways to provide respite programs that work.

Care partners want and need help. Don’t add insult to injury by telling them to ask for it, or worse, ignoring them when they do. Don’t stand on the beach and shout advice to people as they drown. Find out what they need and take action.

Do something.

https://myalzheimersstory.com/2014/07/13/an-open-letter-to-everyone-who-knows-what-i-should-do-before-i-ask-them/

https://myalzheimersstory.com/2017/10/04/7-things-dementia-care-partners-need-more-of/

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Care Partnering, Challenges & Solutions, Tips, tools & skills

50 names not to call alzheimer’s me

January 21, 2016March 6, 2018 My Alzheimer's Story

“Calling me ‘dear’ is like a red flag to a bull,” I once said to a friend. “It makes me want to charge. It’s patronizing, condescending, and rude.”

It also rankles me when I hear elderly people who live with dementia being called pet names by others who could be their children or grandchildren. Maybe these folks think it’s sweet to call old people dearie and the like, but it’s not. It’s disrespectful at best, and dangerous at worst. It diminishes and demeans; it’s one of the myriad ways we rob the elderly of their dignity.

Take a look at this revealing 2008 NYT article, which says:

“…a team of researchers videotaped interactions in a nursing home between 20 residents and staff members. They found that when nurses used phrases like “good girl” or “How are we feeling?” patients were more aggressive and less cooperative or receptive to care. If addressed as infants, some showed their irritation by grimacing, screaming or refusing to do what staff members asked of them.”

And Karen Austin reports in Elderspeak: Babytalk Directed at Older Adults:

“Public health experts have found that when older adults are exposed to the patronizing language of elderspeak, their performance on tasks decreases and their rates of depression increase. Other studies show that even people with moderate to severe dementia can tell when people are talking down to them, and it decreases their level of co-operation.” (Italics mine.)

It’s no wonder older people with dementia respond with anger and aggression. Anyone would. I can see myself behaving exactly the same way if and when I get Alzheimer’s disease and someone tells me it’s time to “wake up dear, get up dear, sit down dear, drink your juice dear, calm down dear, do this dear, don’t do that dear, give me that dear, that’s not yours dear, be quiet dear, go to sleep dear…. ” all the while patting me on the hand as if I were a child, which I won’t be when I’m 80, even if I have a brain disease.

“Stick in your ear dear!” I hear my future self snap. To lessen the possibility that I may be labeled violent and aggressive, and then medicated into submission, I’m laying some ground rules ahead of time. Here are 50 names I don’t like being called now (unless you’re my mother or lover), and will like even less when I’m old and living with dementia; use them at your peril:

Angel
Angel face
Baby doll
Baby cakes
Buttercup
Beautiful
Beauty
Cutie
Cutie pie
Darling
Darlin’
Dear
Dear one
Dearest
Dearie
Doll
Duck
Duckie
Gorgeous
Honey
Honey bun
Honey bunch
Honey bunny
Honey cakes
Hun
Love
Love bear
Love bug
Lovely
Lovey dovey
Peaches
Petal
Pet
Poops
Poopsie
Pumpkin
Pussycat
Precious
Sugar
Sugar pie
Sugar plum
Sugar puss
Sweetie
Sweetheart
Sweetness
Sweet pea
Sweet cheeks
Toots
Tootsie
Treasure

Prefacing any of these with “My” makes them even worse (e.g. My darling, My dear, My love, My precious, My duck, My pet, etc.). You may call me Susan. S-U-S-A-N. Susan. That’s my name. Not dear. Nor lovey. Nor sweetie. Nor Hun.

And by the way, don’t tell me what do either. Consider yourself warned. In a nice way. Sort of 😛

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Care Partnering, Challenges & Solutions, Resources, Teepa Snow, Tips, tools & skills, Videos

20 expert tips for the driving dilemma conversation

January 11, 2016October 28, 2016 My Alzheimer's Story

Two of the biggest among the multitude challenges facing many Alzheimer’s dementia care partners are:

“I want to go home.”
trying to get a person with dementia who can no longer drive safely to stop driving

This post is about how to get a loved one to give up their car keys. Why? Because we all want to avoid head-on collisions (and BANGS) both off and on the road.

Top tip #1:

DO NOT attempt the “driving conversation” on your own with a loved one living with dementia.

Instead, do this:

Enlist the help of an “expert” outsider whom your loved one respects
Ask the expert to watch the Teepa Snow video below BEFORE the conversation
Give the expert the list of “Tips for Conducting the Driving Dilemma Conversation” (you can download the PDF at the link below the video)
Do a practice role play with your expert (you act the part of your loved one)
Identify pitfalls, develop responses to use with the tips below

Tips for the expert whom you will enlist to conduct the driving dilemma conversation (see disclaimer):

Create a connection
Use “hand under hand”
Make eye contact
Identify the issue
Flag the emotion
Acknowledge competence
Ask questions
Praise & agree
Show you know what they value
Understand their position
Invite them to consider consequences
Offer options
Build self esteem
Be respectful
Be on their side (against common “enemies”)
Accept and value their input
Identify external threats
Offer solutions
Give support
Be a partner

See how many of the 20 tips you can spot in Teepa’s video:

You must give all of this information (i.e. the tips and the video) to the “expert” BEFORE the conversation, because even experts need support to get the job done. Success depends on a team effort.

Key words/questions:

Could we try?

What do you think?

As Teepa suggests:

“Use what you know about their values and what is important to them to help them make hard choices.”

Download 20 Tips for the Driving Dilemma Conversation

Find more great tips here.

Good luck and let me know how it goes!

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Care Partnering, Challenges & Solutions, Resources, Tips, tools & skills

10 things to remember when you interact with people who forget

January 10, 2016May 10, 2018 My Alzheimer's Story

Many of the challenges of interacting with or being a care partner with someone who lives with dementia stem from our own behaviour and expectations.

Memory expert and author Dr. Bill Beckwith suggests 10 key things to keep in mind to help ease the stresses and reduce the anxiety levels of everyone involved:

1) People with dementia (PWD) are not lazy

Rather, many lack the initiative they may once have had. They may become apathetic and less likely to initiate activities or discussion than they previously did. They need environment and social interactions to encourage them to participate in activities and engage with others.

2) Memory loss is not intentional

PWD do not display “motivated forgetting.” They do not remember what they “want to” or “have to.” They do not have “selective memory loss.” They have no control over what they remember and what they forget, which may change from one minute to the next.

3) QTIP (Quit Taking It Personally)

Don’t take comments, anger, or lack of appreciation personally. Despite the fact that those with dementias may reflect your mood back to you or say offensive and hurtful things, they are not acting with deliberation. Besides memory loss, dementia is marked by poor judgment, a decline in the ability to think “logically,” and a tendency not to follow social conventions. Dementia produces a developmental shift to child-like behaviours and reasoning.

4) Inconsistency is the rule

Even as the disease progresses, PWD experience lucid moments as well as flashes of insight, and, while these moments become less frequent and less clear as decline progresses, they may occur until the very end.

5) Don’t challenge delusions or hallucinations

Arguing and/or using logic to counter false beliefs or perceptions (e.g. someone stole my car, there are strangers in the house), is a waste of time and energy. Most delusions and hallucinations are harmless and if not confronted will resolve if approached with compassion and distraction. Confrontation is likely to increase confusion, frustration, agitation; it may trigger anziety and/or aggression and result in PWD being unnecessarily medicated; that’s why it’s so important to never never argue.

6) Don’t try to force memory

Persons with memory loss forget that they forget. Repetition and reminders do not help recall as the disease progresses and the memory becomes more severely impaired. Trying to force recall or asking “Don’t you remember?” may elicit frustration, depression, or agitation. Don’t ask questions, make statements instead.

7) Stick with it!

Interactions with someone who lives with dementia can be uncomfortable. It’s tiring to constantly deal with repetition, lack of initiative, and self-focus. However, PWD need social interactions as much as the rest of us. In fact, they may need us to connect and engage with them more than ever. Don’t abandon those who live with dementia just because it’s the path of least resistance.

8) Be realistic

Don’t hold onto false hope that PWD will improve. Dementia is irreversible and often progressive. Current medications may slow the rate of decline but they do not reverse or stop the deterioration of brain cells. On the other hand, don’t give up on someone who has dementia. Opportunities for growth, healing and beautiful life experiences remain for all of us until we finally die. Take advantage of what skills remain.

9) Don’t compare

Although there are similarities among individuals with dementia, there are a multitude of individual differences as well. Not everyone becomes incontinent, aggressive, unmanageable, subject to sundowning, or forgets who loved ones are. People are unique. People with dementia are also unique – they are still people!

10) Go with the flow

Those with severe memory loss live in the moment – they may not recall the recent past or be able to anticipate what comes next. The environment and people around them must draw them in and simplify their interactions with the world. More about going with the flow here.

Besides these 10 important things to remember, it’s also vital for caregivers not to forget their own needs.

Dr. Bill Beckwith is a professional psychologist and speaker. He has his MA in experimental psychology and a Ph.D. in clinical psychology; he was a university professor for 12 years. He earned many teaching awards and developed a memory disorders clinic and a center for excellence in memory care. He has completed more than 3,000 memory evaluations, and is the author of Managing Your Memory.

https://myalzheimersstory.com/2016/05/05/6-ways-to-create-better-dementia-care-relationships/

More great tips here.

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Care Partnering, Challenges & Solutions, Resources, Teepa Snow, Tips, tools & skills

13 expert tips to help with “I want to go home.”

December 29, 2015March 4, 2019 My Alzheimer's Story

Teepa 13 home tips pic painterly

One of the greatest challenges dementia care partners face is “I want to go home.”

People with dementia often “want to go home,” even when they are in a place they may have lived for years.

It’s frustrating for the person with dementia who is convinced he or she needs to be somewhere else. It’s also frustrating for the care partner who doesn’t have dementia because there seems to be no way to solve the problem.

We would gladly take people with dementia “home” if only we could. Sadly, we can’t because the place they want to go exists only in the reality of their minds.

But we CAN:

find creative ways to deal with these situations when they arise
employ strategies that reduce the stress, anxiety and pain of the “going home” problem.

Here are 13 tips that will help defuse “I want to go home” (see disclaimer):

Don’t argue
Try something different
Agree and validate
Say you’re sorry
Build self-esteem
Offer incentives
Create collaboration
Give reasons to be “here”
Remember: we are the same
Remember: their filter is gone
Remember: value and purpose
Think! How can you work together?
Role play and practice

In the video below, dementia care pioneer Teepa Snow teaches a care worker a better way of handling “I want to go home” (the demo starts at about 1:15 and finishes at about 7:00):

There are more great tips here. And this is how I imagine it might feel for a person living with dementia in a long-term care facility as they experience wanting to go home.

https://myalzheimersstory.com/2015/04/19/20-questions-that-help-explain-why-people-with-dementia-get-agitated-and-physically-aggressive/

https://myalzheimersstory.com/2017/11/25/101-potential-causes-of-behaviours-by-people-living-with-dementia-that-institutional-care-staff-may-find-challenging/

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Challenges & Solutions, Family, Life & Living, Tips, tools & skills

what to say to family members who ‘can’t bear to see mom or dad this way’

December 5, 2015November 16, 2017 My Alzheimer's Story

The comment wasn’t a comment, it was a plea:

“Please help me with the ‘right’ words to say to my sister,” Nancy wrote. “She won’t visit our dad or help in his care because she says she just can’t bear to see him this way and she wants to remember him how he was.”

Countless care partners find themselves in the same situation as Nancy. It’s frustrating, painful, and stressful when you don’t getting the support you need from others. But we can’t control their thoughts and actions.

My reply to Nancy came from the heart. I responded:

Everyone deals with the changes dementia produces in someone they love in different ways. Some people really can’t bear to see other people change, whatever the changes might be; some people want things to remain the same even when that’s impossible. Some people cannot abide suffering. I understand that–having to watch loved ones suffer is torture for me. On the other hand, some people don’t have an empathetic, sympathetic, or compassionate bone in their bodies. I’ve experienced the tragedy of that firsthand. So have thousands of other care partners. The only person we have control over is ourself, and sometimes we feel we don’t even have that.

If I found myself in this situation, I might try something like this:

“I understand how you feel. It’s really hard to watch Dad decline and not be able to do the things he used to do, or to relate to me in the same way he used to. I feel sad Dad is ill. Really sad. But I have found a way to see him as he is now from a new perspective. Not as someone less than who he used to be, but as someone different than he was in the past.

I still see his core and spirit, which to me remain the same. I’m happy and grateful I can still connect with him and keep him company at this time when I believe he really needs me. I think about what he would do if I were sick, or facing a challenge, or whatever. And even though it’s hard, I want to hold his hand because I think it’s the right thing to do and because I love him. I think about what I would want if I were in his place and I try to do things I believe will bring him pleasure and joy.

I understand you don’t feel the same way I do, and for you it’s too painful. My wish would be that you would try to see him in a different way, as the person he used to be and still is at the core of his being. But I understand if you’re not able to do that. Just because I wish it, doesn’t mean it will be so.

I remember Dad as a vital, engaged, dynamic person full of passion and energy. And I still se those qualities in him despite this disease. I want to celebrate who he is right now as well as the person he was yesterday, last year, 10 years ago and even further back.

I don’t believe this disease can take away who Dad is. I value him as he is, just as I also cherish the memories of who he was and the relationship we had. I don’t believe Dad will be gone until he dies. I understand it may be too painful for you and I’m sorry for your pain.”

That’s what I would truly feel in my heart, and that’s what I would say. I believe we have to speak our truth, and then detach from the outcome, all of which is easier said than done.

“That’s my truth, Nancy,” I answered. “You have to find your own. When you do and when you speak it, you will be free to joyfully do what you must for your dad and you won’t waste energy trying to force your sister to behave in the way you think she should. What is right for you may not be right for her.”

I closed with a qualifying note: “It’s a whole other kettle of fish if your sister has legal responsibility for your dad and is neglecting his care in some way. If that were the case, a completely different course of action would be required.”

All of this said, an equally valid and necessary response in these and other situations when all the right things have been tried and failed might be to tell siblings, family members and others to “Stick it!”, forget about them and move on.

You gotta do what you gotta do.

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Care Partnering, Toward better care

the heartbreaking reality of caring for someone with alzheimer

July 31, 2014July 1, 2017 My Alzheimer's Story

“What is it really like to deal with the reality of Alzheimer’s?” reads the Quora question.

The short answer is: terrifying, demoralizing, exhausting, draining, all-consuming and thankless. It can also be uplifting, joyful, rewarding, magical, inspirational and enlightening. It’s a living roller coaster ride like none other. It pays to look at it from a glass half full perspective for the benefit of all concerned.

The 36 answers to the Quora question recount variations on the same tragic theme: the painful reality for many primary caregivers is a daily grind of repetition, frustration, helplessness and hopelessness which some willingly endure for love and others undertake because they have no choice.

I share this account by nurse Bianca N. Diesel because of the similarities to my own experience (no doubt the story will resonate with many others as well); Ms Diesel writes:

My mom just got off of 72 hour suicide hold because she decided that it was better to just end her life than to continue taking care of her mother with Alzheimer’s. She has 2 brothers that haven’t helped take care of my grandmother at all so mom has dealt with grandma full time for the last 5 years.

Five whole years of grandma getting worse and worse. We all almost stopped going around because just being around grandma for a short time makes US crazy. An hour at mom’s felt like ten.

“Would it be a hassle for you to take me to Middletown, Brianna?”

“Grandma, you’re IN Middletown.”

Five minutes later.

“I need to go home to my house in Middletown.”

“Grandma, you live here and this IS Middletown.”

Looking puzzled, “I OWN my own home. I need to go there.”

“Grandma, you live here with mom. You sold your house years ago.”

Then mean, “If I sold my house then what did YOU do with the money?”

Repeat that 50 times. And then she’d tell me I have a nice ass. Also, Brianna is my cousin. That was just the hour that I was there. Mom dealt with that 24/7. No one wants to spend time there anymore. No one wants to call mom anymore because you can hear grandma in the background, constantly interrupting with the incessant questions.

So, mom had a meltdown four days ago. She couldn’t face putting grandma in a nursing home and her brothers were being selfish with their lives. She couldn’t even sleep at night without grandma coming into her room multiple times a night and asking for a ride home. One night she woke up to find grandma in the kitchen with a big knife trying to cut an apple.

Another, grandma was out on the back porch with a few bags of clothes packed up, ready to leave. Grandma had begun to urinate in garbage cans in her bedroom and had defecated in the floor in her bedroom more than once. Mom had had enough. Grandma is in the hospital right now. Guess she’ll be going to the nursing home this week. This is the reality of my grandmother having Alzheimer’s and how my mother attempted to take care of her without sending her to a nursing home. My mother has rheumatoid arthritis and is in pain most of the time. Also, she is a retired ER nurse.

*My grandmother died on November 14th, four months after I wrote this. She died in the nursing home.

Like Bianca Diesel’s grandmother, my mother also died in a nursing home. That fact too, broke my heart.

If you are a caregiver, find support. Look for these support groups on Facebook:

Forget Me Not
MemoryPeople
Alzheimer’s and Dementia Caregivers Support Group
Dementia Aware
Dementia Caregivers Support Group
USAgainst Alzheimers

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Care Partnering, Life & Living, Love

an open letter to people who think they know better

July 13, 2014November 11, 2018 My Alzheimer's Story

This post is dedicated to care partners worldwide, many of whom are unseen and unappreciated. On behalf of those you care for, thank you for all you do.

July 13, 2014: Dear random person who sees my mom from time to time and feels the need to point out she has bruises all over her body that look frightening and she has really declined a lot since the last time you saw her and she can barely walk anymore and she’s asleep when she should be awake and sometimes vice versa and you hardly recognize her as the person you used to know and you’re really shocked and feel bad seeing her like this and isn’t it sad and a shame and this is what you would or wouldn’t do if it were you and you would rather be shot than end up like her,

Yes, I know. I see Mom virtually every day. I spend endless hours and fleeting moments with her talking nonsense and singing and helping her to stand when she wants to. Every minute is torture; every second is precious. When she is able, she and I shuffle around the sun deck at the ElderJail in which you may have briefly visited her (or not) and in which she and I have spent hundreds and hundreds of hours together.

If you did drop in to see her, did you notice some of the flowers in the planters around the deck at the “care” facility are the same kinds Mom nurtured in her own window boxes, the ones she loved to water in the early evening with her green watering can and rain collected in the old wooden barrels at the southeast and northwest corners of the big red brick house on the hill where she lived for more than 40 years? You didn’t? What a pity!

She loves begonias, geraniums, petunias and impatiens. She had cosmos, daffodils, daisies and phlox in her garden. We joyfully rediscover flowers each time we explore the sun deck at The Home which is not really a home at all. It’s just a necessary evil on the road to her final destination.

I know by the way she rocks her body back and forth when she wants to get up and get moving, and by the look on her face and the feel of her hand in mine if she is able to stand unassisted. Mostly she’s not, so I am by her side whenever I can be. I know by the way she pats her hair that she loves the fact it’s “done,” and by the way she touches the cut on her face that it worries her.

I know the colour and brand of her nail polish because I buy it. I know when she had her last manicure because I did it. I know when her sleep is medicated and when it’s natural by the slackness of her mouth and the sound of her breath.

I change her “diapers” and clean her bottom. I recognize her wheelchair by the stain on the seat. When she needs me to, I feed her like a baby. When she doesn’t, I celebrate that she can lift a fork to her mouth and feed herself. I have cried with her, comforted her and felt the sting of her acid Alzheimer’s tongue. I help her engage with her shrinking world, not simply exist in it.

I see her in ways you can’t even begin to imagine. I see us reflected in the mirror of each other. I pray for her to stay and go. I watch her look death in the eye and grab life by the horns every day despite her illnesses. I am her cheerleader, her advocate, her voice. I am her child/mother. Our souls are linked; our destinies are intertwined.

Who are you? You are a casual observer making ill-informed assumptions and coming to erroneous conclusions based on incomplete information. I have experienced first hand the effects of decisions I’m told are in her best interests, but which in reality have little or nothing to do with her health and well-being and everything to do with convenience, reducing costs and conserving her wealth for someone else’s use once she’s gone.

The effects of the decisions in which I have no say include the cuts and bruises about which you feel compelled to apprise me. Your thoughtless and insensitive comments add salt to other wounds you cannot see. You don’t know me. You don’t know my circumstances. Neither do you know my mother or hers.

Next time you run into me on the street or at the theatre or outside the care facility or even inside the care facility and are tempted to comment, judge, berate or advise me on aspects of my mother’s condition or her care or my role in her life, please consider all of the above and mind your own business instead of mine.

If and when I want your advice I’ll ask for it.

With gratitude,

Susan

P.S. to all my beautiful friends and acquaintances worldwide who give me oodles of unconditional love and support and share their wisdom and experiences with me when I solicit their input: thank you, I love you and I am so grateful you are here to hold my hand ❤

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

https://myalzheimersstory.com/2016/10/28/6-reasons-why-staff-in-long-term-care-facilities-dont-report-incidents-of-elder-abuse-and-neglect/

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Tag: advice

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7) Stick with it!

8) Be realistic

9) Don’t compare

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