10 Absolutes in Dementia Care
Shared by another member here - Thanks Chug!
Here is one you can download or print:
Comments
-
Thank you, Butterfly Wings. These are all good reminders.
1 -
Added to new caregivers group: https://alzconnected.org/group/32-new-caregiver-help
1 -
Thank you so much for the link to print or download. This is priceless.
1 -
A very good reminder. Thank you
1 -
How about for those of us having to care who can't do those things? If we were social workers, we would chosen that career.
0 -
Before experiencing this life I may have said, "can't, or won't?" — or maybe "well it comes with the territory and you must do those things, or should not be a caregiver".
Now, I definitely do believe that some cannot. And I totally understand that. This is extremely tough, stressful and beyond, for the carer and not everyone wants to nor should be in this role. I am not sure of the details for "having" to care, but hope that you and others who feel this way can find an alternative situation and caregiver for the PWD in question.
Dementia only goes one way as we know. It gets harder and so does the road for the caregiver. Without being able to do the things listed on the chart, and more, it is unfair to both the PWD and the caregiver. At least the latter has a choice in most cases. You can choose not to serve in the role. But for anyone who stays, I really hope they will practice and try hard to embrace the approach above. For your sake and especially our PWD LOs.
4 -
I certainly understand what you are saying. I have always been a very impatient person. I was never good at taking care of others, I expected more cooperation from them. I would argue at the drop of a hat and defend my position at all costs.
I am learning. I am learning patience, I understand DW's forgetfulness is not her fault. I understand she is doing the best that she can. I have learned that she wants to take care of herself, she doesn't want to burden me and she hates her condition more than I do. I have learned that I gain nothing by winning an argument, being "right" brings me no satisfaction. I have learned that if I can keep her calm, peaceful and happy she functions so much better. I have learned that when she is at her best we are both happier.
Do I find it hard to do? Of course. Being vigilant 24 hours a day is tiring. Do I feel sorry for myself? Yes, at times I do.
We are fairly early in this journey and I hope I can endure, but I think I can. I think I am actually becoming a better person. I think I am becoming the person she always believed me to be.
13 -
Dear Pachana,
After four yeats of this March (it is not a journey) I fail at every one of these rules at least once a day. The biggest thing, I believe, is that a caregiver must give her/himself the forgiveness to do the best you can and the grace to know you will not always succeed. All of these are wise precepts, but they can be a strangle hold. What I have learned is necessary in caregiving is first, a sense of humor; second a willingness to try, fail, and forgive yourself over and over again, and third, the ability to put your needs ahead of the person with dementia. No one can make the rules for your situation but you. Because no one else is living what you are going through. God bless.
Kate
7 -
I am 82 and now I know all my character traits which make following the 10 Absolutes so hard for me.
I have always wanted the 'truth', accuracy in everything. I fail with my HWD constantly because he 'seems' so with it most of the time.
When he makes a statement that isn't true/accurate, every fiber of my being wants to 'help him" by explaining what actually happened. His arguing makes me crazy, and I now realize that I just have to 'let go of truth/accuracy' and agree with him, or ignore the issue.
He won't remember the next time, anyway. So there's no point in pushing him to understand my version of events. His version of everything is his…..and if he tells other people about events in a garbled way, I have to 'let it go'. But the Absolutes go against every fiber of my being, so I have to work on this constantly. It also makes me overwhelmingly sad that my brilliant research scientist is gone now.
Elaine
11 -
Thank you for this. It will be a very helpful reminder for me.
0 -
I too share your personality traits. I am a proponent (as was my DH) of precise language, facts, efficiency, realistic expectations and this is how I hold my own life together. ALZ caregiving is challenging every fiber of my being. I want my DH grounded in facts, communicating with precise language being efficient, having realistic expectations. This incredibly talented and smart man I married no longer is like this. It breaks my heart every day and it literally is destroying the foundation of our daily lives.
Will we adjust? Do we have any choice? Time will tell.
1 -
It is hard, and I know we all make mistakes. I know i do. I am beginning to learn that life is better for both of us if I let the unimportant statements rest. When i first attended an in person group the group leader said "don't be a right fighter". That has been the most important piece of information i have learned.
4 -
So true thank you.
0 -
I'm scared shitless. After 52 years of working, I was forced into retirement at the age of 69 about a year ago. At the time I was made to retire, my daughter pressed that we have her mother evaluated for dementia because of her noticeable forgetfulness, which she too acknowledged. We took my wife to a respected neurological group specializing in dementia. After several months of tests, MRI's, Spinal Taps, Tests and more Tests, as well as seeing several specialists in the group, the verdict came out early stages Alzheimers. She just went in for a 9 month followup which came out pretty well, but some decline. Mostly a loss of 20 lbs of weight she couldn't afford to lose.
Since her diagnosis there have been some behavioral changes that have proved to be frustrating. The two top rules are never argue, never reason, which contradicts the very aspects that got me through life. Are the terms of having to successfully deal with this disease, having to give up one's own metal well being, compromise one's own sense of mental health? It's like an entity is invading the person who I married, the person I shared 40 plus (46 years now) years of my life, and transforming her into someone else; a person I never knew. Alzheimers is changing her into someone who'll sit on the bathroom floor for two hours picking out microscopic black threads out of the bath throw rug. This is something she'd never do. She sat there two solid hours before I asked myself, where'd she gone off to? On top of the strange things she's started doing there is an ever growing list of things I am not allowed to do. It seems I can't do anything correctly. For instance we have a receptacle for trash in the bath, but I'm forbidden to use it. This alien person that's emerging sometimes drives me crazy, and there is no one I can talk to. And now according to these rules I see I can't argue, and I can't reason? Oh God how I know I can't reason with her. She was a mathematical genius and had scored a 99% score on the FAA's test for Air Traffic Controller, the second highest score in the US for the nationwide test she took. And now I find its a challenge to explain things to her; she's sometimes not grasping simple concepts, and its exasperating because she and I never had trouble communicating.
Professionally I had been an engineer working in a large corporate environment. My work meant to survive one had to be able to to confront, to argue, to demonstrate why my ways might be better than another's approach. Reason, and rationality was the basis of my life. Its how I survived life, and especially how I survived having been born into an extremist fundamentalist religious cult. To survive meant seizing control of my life and standing up for myself. Cults have a way of beating one down. I had to scrap to avoid being absorbed. But in dealing with my wife's illness requires much more from me than empathy. It kills me to see her fear losing herself and I try to be there and comfort her. But on the other hand I'm being driven crazy by the amazingly senseless things over which I seem to have to concede.
I have no one to turn to. Since her diagnosis last year its become clear my kids don't want anything to do with the circumstances and now I'm 70 and not in ideal health condition myself. I've had heart issues since 2016, and a bad back. In 2020 I had a touchy, bilateral knee replacement, had blood clots which complicated the surgery. Now I have to confront this terrible disease alone. I'm scared shitless and depressed, and its not like I hadn't some experience with this disease, and a good idea of what lays in store. My great grandmother (I knew her well, I was 13 when she died), my grandmother (who died when I was 41), and my mother all had severe dementia in which their cognition degraded to the point where they didn't recognize close family members. I know about the incontinence, the getting lost, the not knowing where they are.
Alzheimers also ran in my wife's family. Besides some of her paternal Uncles had Alzheimers, my wife's dad died from Alzheimers in 2009. At the very end of his life he became stubborn and refused to eat and wasted away until he died. My wife is a lot like him. Always thin, she lost 18 lbs since last September, and food has never been important to her. (Ironic since she worked as a chef for eleven years) Very slim her entire life, last week at the docs was the first time in our 46 + yr married life that her weight slipped to under 100 lbs. Even the doctor expressed some concern. And I know we've just started with years of more ahead. This is an awful disease that strips a person from their dignity.
Now I feel like I have to bear up to the challenge alone. Some years ago my daughter had encouraged the idea of purchasing a mother daughter arrangement, but four months ago my son in law came into a substantial inheritance, my daughter doesn't even want us near them. It seems as though she wants no part in the challenges ahead. Since their marriage 15 years ago they lived only 5 miles away but now they're planning on moving to a larger place (which they really need). There's no more talk of a mother daughter arrangement. I sometimes feel so frustrated I want to scream. or cry Yet I feel there is really no one I can turn to. Even my counselor, for all her great insight, and who was the one who suggested this forum, doesn't understand what it is to live with Alzheimers. What do I do?
5 -
First of all, yes your situation sucks. You have the sympathy of everyone here. The disease is heartbreaking, as you already know from your family experience.
Second, this is the place you need to be, It's a great place to vent, to get support and validation, insight, and help. The collective experience of the people on this forum probably far surpasses any individual counselor you'll encounter. They've probably seen it all.
Third, I was also an engineer, and I know what you mean about things being correct. What I've learned is that you have to realize that your wife can't reason, so it's pointless to try to correct her. Certainly don't give up your need for correctness in other aspects of your life, but your life will be much easier if you gradually learn to agree to your wife's falsehoods in the cases where it doesn't matter. We're not all successful all the time, so don't beat yourself up when you fail occasionally.
I'm a terrible liar, but I've had to learn to use "fiblets" to interact with DW. You learn to agree with things that aren't true. You learn to correct the irrational things your wife does with the rational thing when she isn't watching.
Yes, be concerned about your mental health. That's where this forum comes in. You need a place to get support. This is the place to come because you say you have no one else to talk to. (I'll also mention the Alzheimer's hotline, 800-272-3900.)
So, welcome to the group no one wants to belong to. Come back often.
4 -
I am so sorry you had to join the club with us. Its a brutal journey, but we hear you and understand.
I am retiring at 59 at the end of this year because it's been impossible for me to keep working. I had to take a medical leave earlier this year because I took too long to realize that I really needed help. And that help would give me the necessary respite time away from my DW and all the heartbreak, responsibility, frustration, etc. I fought trying to do it all alone and it was a mistake.
In home care helps me more than I could have imagined. I hope you can find someone to hire to help you out.
3 -
welcome. Sorry about the reason you find yourself here. This is the place for info and support. We all know exactly what you’re going through. Learn all you can about the disease. Read the book “The 36 Hour Day” which really helped me after my husband’s diagnosis. Also search for Tam Cummings videos online. Come here often. You can ask questions and vent whenever you need to. It will help you get more replies if you do a new post. Click on the plus sign on the main page. Do a search for a post with the title The Calvary is not Coming. I’ll also see if I can find it for you.
0 -
here’s the link to a post “The Calvary is Not Coming”
0 -
Golden, you will hear the expression that you need to “live in her world now”, which isn’t literally true but is a very useful tip. I also worked 45 years in a corporate engineering environment and understand that precision and using data to find one truth was critical for group problem-solving and execution. That world has been replaced by what I would call parallel universes. You, as the responsible party in the real world, will need to use all your skills and experience to problem-solve for both of you now. Your DW can’t help you and will only make things more difficult if you try to reason with her the way you used to. This is the essence of the Cavalry Not Coming message- you are on your own, so take charge. On the other hand, your DW now lives in and sees things quite differently in her parallel universe. The wisdom of the crowd on this board and elsewhere is absolutely correct that if you try to resist your DW’s worldview with logic you’ll pay a heavy price in heartache and turmoil. By learning to embrace our spouse’s reality (while still being responsible in the real world) we can help validate and bring an emotional calm that helps them get through one difficult day, one difficult moment, at a time. Those concessions to reality that you make won’t matter tomorrow because they won’t remember and the whole cycle begins again each day. Take good care of yourself and get help wherever you can.
4 -
I love what you wrote. You explained it perfectly. Thank you.
2 -
Can't/won't…..bottom line is that these things make life easier for the caregiver. Selfish? Yes, but true.
0 -
My heart felt sympathy. We all have been there. I'm one of the lucky ones. I can leave my Dh alone for 4 hrs at a time, so I work 10 or less hr a week. I have 360 on his phone and some great neighbors that all know what is going on. He doesn't drive and there's. No car for him. The break helps me so much. Maybe you can find someway to get one.
0 -
I suppose I am a dissenter here but I feel safe to express a different opinion about the usefulness of “absolutes”.
While I understand the intent of these “absolutes”, I don’t need anything in my life deemed absolute. It is not helpful to me to think in absolutes. Nothing in our lives is absolute. There is no predictability in what I can do to help my DH because something that works one time might not the next. I don’t want the pressure of someone telling me “never do this or never do that”. I don’t need to try and live up to a standard of “absolutes”. I will fail. I will absolutely (pun intended) be unable to do the things on that list.
The standard I try to follow is to react as calmly as I can; be as flexible as I can be and when things are not working, walk away for a moment till the storm passes. And above all else, I try to solve the issue we are having from a place of love and kindness.
4 -
Much appreciate your wisdom: flexibility & response to each particular moment is so much more important … as I am learning with my DW!
1 -
Be flexible. Try to embrace them as aspirations. They're helpful when considered that way. It's probably what the author intended.
0 -
As I stated, I understand the intent but I find the terms “absolute” and “never” are unhelpful to me. The author could have called the list “Ten Goals of Caregiving” and instead of “never” use the term “strive” and it would have spoken to me personally in a much better way.
Just for the record, I am flexible but I do not like “absolute” and “never” language. It can be guilt and shame producing instead of aspirational.
0
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more
Categories
- All Categories
- 521 Living With Alzheimer's or Dementia
- 266 I Am Living With Alzheimer's or Other Dementia
- 255 I Am Living With Younger Onset Alzheimer's
- 15.4K Supporting Someone Living with Dementia
- 5.4K I Am a Caregiver (General Topics)
- 7.4K Caring For a Spouse or Partner
- 2.2K Caring for a Parent
- 198 Caring Long Distance
- 120 Supporting Those Who Have Lost Someone
- 14 Discusiones en Español
- 5 Vivir con Alzheimer u Otra Demencia
- 4 Vivo con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer de Inicio Más Joven
- 9 Prestación de Cuidado
- 2 Soy Cuidador (Temas Generales)
- 6 Cuidar de un Padre
- 22 ALZConnected Resources
- View Discussions For People Living with Dementia
- View Discussions for Caregivers
- Discusiones en Español
- Browse All Discussions
- Dementia Resources
- 6 Account Assistance
- 16 Help