What is Normal ? and does it have to be sad ?

daveflowers

Registered User
Apr 12, 2008
2
Derby
This may be inappropriate but i need to know if im tackling my dads Vascular Dementia in a suitable way.
The rest of my family ,brothers ,sisters uncles and aunts really do get upset in front of my dad, where as im the opposite and am sometimes looked on by scorn at the way i and therefore my wife and children are with him.
I take the approach of while hes with us enjoy him and when he is on a good day, encorage him to enjoy and on a bad day i still encourage him to enjoy. When he really belives that he is talking to family members who have passed away i ask him questions to relay on, where as other family blurt out crying and upset him.
I understand and appreciate that all people are different in not just their outlooks but also in how the deal with emotional stress but it really does get under my skin when i see all these tears.
Yes, my dads going down hill rapidly, he has a good day, bad day alternate and most seem to only go see him on a good day (which is no help to my mum as she needs the support on the bad days) but when they do go its allways upsetting for my dad.
My dad will sit and chat with folks who are not there, its part of him now, accept this i say. He will wander about in a totally different world, seeing things from the past or goblins and fairys, this is my dads world with his condition. He is quite happy living like this at this moment in time so why carnt the rest of the family just ****** accept it.
We all know how eventually his condition will end, my wife and children have accepted this and we have lots of fun with him. Every days a bonus Good or Bad, so does it have to be sad ? I dont think so, Frustrating, Draining of both mind and body, But Sad ?
I would love to hear your thoughts as to whether my wife and I are guiding my children the right way and other peoples ways of dealing with Dementia.
Thankyou and Kindest Regards,
Dave.
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Dave, I think you have a wonderful attitude.

we have lots of fun with him. Every days a bonus Good or Bad, so does it have to be sad ? I dont think so, Frustrating, Draining of both mind and body, But Sad ?
No, it doesn't have to be sad. You are helping to keep your dad cheerful, and that's the best way to help your mum. It doesn't help anyone to keep looking for the negatives.

And what a wonderful lesson you're giving your children, too. They are learning not to be afraid of people who are ill, or who say strange things. You are bringing them up to be loving, caring adults.

Well done you!:)
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,112
Kent
Hello Dave.

I think you are being very strong for your father and I admire your efforts to try to be as positive as possible with him.

But I also feel perhaps a little tolerance towards family members who perhaps are not as strong as you, wouldn`t go amiss.

There are times when I too can jolly my husband along, but there are other times when it breaks my heart to see him confused and frightened and I find it hard to control the tears.

It takes all sorts to make a world Dave and it shouldn`t `get under your skin` to see tears.

Take care xx
 

heartbroken

Registered User
Feb 17, 2008
747
derbyshire
I think you are great keeping a brave face on things and helping your dad be happy but some people can't be as you are so please dont be to hard on the rest of the family. you are teaching your children the right way so please don't show them ant other.
I look after my step mum and like this week school hols I have to take my 7yr daughter with me, I have sat her down and explained things to her the best I can, she is great and helps us lots, don't shut your children out its good for them to learn and help were possible plus I find Edna listens more to my daughter.
 

hendy

Registered User
Feb 20, 2008
506
West Yorkshire
Hi Dave
Thank you for posting. Everybody reacts to the symptoms of dementia differently. I have found the easiest way to cope with the diease is as you say, to accept the behviours. The quicker we can accept them the more we are able help, as positively as possible. I have taken this approach with my children in accepting and understanding the behaviour of my dad who has vas dem. I think you're right, your other familiy members crying in front of dad will upset him. Somehow you need to educate them to your way of thinking. Being blunt may or may not be effective, you'll have to think of the way that is best. In the past when I have been traumatised by my dads symptoms, I always had my husband reminding me of 'if you think its bad for you, imagine how bad it is be for your dad' This certainly got the message across. As Sylvia said though, people are upset by the disease and you can't get away from that for very long. Even in the saddest moments, I try and try to find the positives but when you are the sole carer ( and partner)this can be very very difficult. Your mum will need all the support you can give her. Enjoying what time your dad has left with you all is the best way to cope with dementia.
take care
hendy
 

river_

Registered User
Oct 15, 2007
33
UK
You sound like you are doing well, possibly it would help the rest of the family to learn about communicating and connecting in dementia.


Using Validation Therapy to Manage Difficult Behaviors
by Jan Allen, CSW, MSE
More About Jan. . .

REFLECTION

As a caregiver, you have been introduced to a new and different world - the world of dementia. People who inhabit the world of dementia are in a very different place than those of us who live in "Reality" (whatever that is).

1. Time in the world of dementia operates completely differently than time does for the rest of us. First, time is not sequential in the dementia universe. Time can be present at one moment, past at another and future at another. Time has absolutely no continuity.

2. Memory is very different in the world of dementia. Past may be confused with present. Memory may be there one moment and gone the next. The mind plays hurtful tricks in the world of dementia - making a known and loved child or spouse into a stranger to be feared. Family may no longer be family. As much as we in the "Real" world know that this is our mother or wife or husband, the person in the dementia world does not know these "Realities". S/he only knows what they know at any given moment. It is so hard to accept their dementia world.

It is so different from what we know in the "Real" world. Yet, there is no successful alternative but to accept whatever the dementia person claims as their reality - no matter how untrue it is to us. There is no successful way to "force" a person with dementia to join the "Real" world. In my experience with older persons, the most frustrated caregivers I have observed are the ones who have not accepted this simple fact: the world of dementia is defined by the dementia victim. We in the "Real" world do not define it. We can only hope to live in it somewhat peacefully IF AND ONLY IF we accept this dementia world on the terms of the person with dementia. If they "see" a rabbit on the couch, they see it. If you are not their spouse, you are not. If it is breakfast time, it is breakfast time (even at 6 p.m.).

Telling the dementia person that "I am too your wife" or "No, John, it IS NOT Friday. It is Sunday." Or saying, "Sally, you don't have any little babies. You are 85. Your babies are all grown up" - these kinds of statements from the "Real" world almost always serve only to upset and distress the dementia person. However, if you say something like, "If you say so, but I'd like to be your friend. . ." or "It's your Friday, huh? What do you do on Fridays?" or "Sally, tell me about your babies."

3. Emotions are also very different in the dementia universe. First, consider that the dementia person's reasoning abilities are very limited or perhaps gone completely. There are actual changes in the brain that affect a dementia person's ability to think. So, they are somewhat like a pre-schooler in their ability to assess, judge, make decisions, etc. Most dementia folks have some difficulty in understanding the spoken language. However, almost all dementia folks can easily pick up on the FEELINGS being expressed. It is very true that in the dementia universe, it is NOT so much what you say, but HOW you say it. When frustration, anger, and loudness creep into your voice, the dementia person is going to feel that much more strongly than the actual words being said. I tell caregivers that if you want to be less stressed, then try to literally become a part of the world of dementia.

Obviously, you have to limit your involvement to safe activities. If your loved one is engaged in some activity that might be harmful to them, you will have to step in and take direct action. However, in most cases, that is not where the frustration comes in for the caregiver. What I have observed is the frustration comes in with more mundane, every day sorts of activities that just don't happen logically, sequentially or "on time" any more. Even if you have never been late to church in 49 years, in the dementia universe, you may arrive at church during the sermon. You may leave before the final hymn. You loved one may "dine" while walking around the house, rather than at the table. Your mother may think you are HER MOTHER! As a caregiver, can you accept these events in the dementia universe? If you can accept that time is different, memory is different, and emotions are different, YOU as a caregiver will be much happier than constantly trying to squash the dementia person into the "Real" world mold that s/he now knows little or nothing about.

VALIDATION THERAPY

A very popular form of conversation with dementia persons is the use of a program called validation therapy. It was originated by Naomi Feil and she has trained many professionals in nursing homes and other health care settings to use the techniques with clients. I think validation therapy can be very helpful to caregivers as well. Here is my modified version.

First, the idea behind validation therapy is to "validate" or accept the values, beliefs and "Reality" of the dementia person - even if it has no basis in your reality. So, if a 67 year old man says that he is a sophomore in high school has to go to the high school so he can run the 100 yard dash in the track meet - validation therapy says, "OK." Here is an example of how a validation therapy conversation might go with a person with dementia.

Chuck: "I have to find my car keys."
Me: "Your car keys..." ( I don't tell him he doesn't have a car and he hasn't driven for years)
Chuck: "Yes, I need to get home - lot's of work to do, you know!"
Me: "You are busy today?" (I don't tell him he is at adult day care and isn't going home for hours)
Chuck: "Hell, yes. I'm busy every day, girlee."
Me: "You like being busy?" (I'm trying to find a topic of conversation that he might accept discussing)
Chuck: "What planet do you live on? I didn't say I LIKED it. I just have to work - like most of the rest of the world, ya know?" (He's getting a little frustrated, but seems to have forgotten the keys.)
Me: "I know about work, Chuck. I do some of that myself. In fact, I'm getting ready to fix some lunch for us. Care to join me?"
Chuck: "Lunch, huh? What are you having?"

Or:

Agnes: (cheerfully) "Well, goodbye everyone." (And she heads out the door)
Me: "Goodbye, Agnes... (I DO NOT tell her "no" or try to stop her right away. I have found that if you give dementia folks just a little room, they will sometimes stop and turn around on their own without a fight. I wait a moment, knowing she will wonder which way to go when she gets out the door), then I say very cheerfully, "Oh Agnes, just a minute... you forgot your craft!"
Agnes: "My craft???" (I walk toward her smiling with her half painted soda bottle/vase)
Me: "Yes, this one has your name on it. Too bad, though, it seems to be not quite finished"
Agnes: "Is that mine?"
Me: "Yes, the colors you selected are just wonderful.. Would you like to finish painting the other side?" (I make a point of looking at my watch.) "We have time, I think?"
Agnes: "No, I have to go."
Me: "Well, ok. Where are you headed?"
Agnes: "Home, of course."
Me: "Home. Isn't it great to have a place to call home. Let's see, I think you live in Amboy. That's about 15 miles from here...."
Agnes: "How do I get out of this place?"
Me: "Well, you usually get out of here when you husband comes to get you. He knows you are here."
Agnes: "Lonnie knows I'm here."
Me: "Sure, he brought you here to this club so you could have some fun time out of the house. He thought you might like being here. In fact, he told me that you really like to paint."
Agnes: (looking out the door that she has slowly been walking toward) "It looks cold out."
Me: "Yes, it is" (I open the door so she can feel the cold air coming in if I had tried to block the door, she would most likely try to walk past me; but when I open the door for her, she "realizes" that I am not trying to keep her against her will - even though that is exactly what I am trying to do because I know it would not be safe for her to try to walk 15 miles home in the cold. There have been times I have actually walked outside or around a building with the person - if it gives them some comfort that I am not going to "make" them stay with me. Usually, after a brief time outside, they will come back in on their own as if it's their idea) "Brrr..."
Agnes: (pulls back when she feels the cold air.) "I guess I need my coat..."
Me: "Agnes, I am sure I saw Lonnie with your coat. He'll bring it to you when he comes to get you. And, he'll have that car all warmed up. That will be nice, huh? To get into that nice warm car when Lonnie comes."
Agnes: "When is Lonnie coming?"
Me: "He said about 2. Let's see (I look at my watch again), it's 11:30 now. So, he'll be here pretty soon. After lunch. Shall we head back to the lunch room?"
Agnes: (she has already turned around and begun walking away from the door)

The key is to "agree" with what they want but by conversation and "steering" get them to do something else without them realizing they are actually being redirected. This is both validation and redirection therapy.

Does this always work? NO! But it has a pretty high success rate because it is so non-confrontational. If you can avoid direct confrontation, you will be much happier and so will the dementia person. I know that sometimes a direct confrontation is needed; but I see those confrontations occur far more often than they need to.

For example, one caregiver told me that her spouse loves to re-arrange the cupboards and it was driving her crazy trying to stop him. My question was, "Why are you trying to stop him?" It sounded like a relatively safe and benign activity to keep her spouse busy. I realize that opening a cupboard and seeing the toaster in a different place every couple of hours might be a little unsettling; but think of all the stuff you can be doing while the cabinets are getting re-arranged! So, maybe it's a reasonable trade-off to have to look for a few things every day.

One caregiver I know was really getting frustrated with her spouse "underfoot" all day long. She knew he had once loved woodworking; but could no longer safely use power tools. So, she had her son set up a "safe" wood shop for his dad. They put it in the garage where the wife could easily keep an eye on him, and the son put all sorts of "safe" tools, sand paper, tape measures, hammers, screws, etc. out on the workbench. Every morning, the wife would pack a lunch for her spouse, and give it to him and tell him he had to go to work. She sent him to the garage where he had pencils, paper, markers, brooms, shovels, dirt, seeds, tools, etc. to mess around with. She made sure he ate his lunch. Sometimes she even "came to his work" and joined him for lunch. This made a huge difference in her tolerance level - and helped her spouse as well.

There is a proven link between boredom and agitation. It is sometimes very challenging to keep a person with dementia busy; but it is worth thinking about how to do that so that they have some opportunity for "failure free" activities that will alleviate boredom and help them to have some meaningful "work" to do.

REDIRECTING

Redirecting is a simple technique of appearing to agree with the person; but getting them to go in a different direction (physically or conversationally) without them thinking they are being pushed into it.

Chuck: "Is there a phone here I could use?"
Me: "Yes." (But I don't show it to him or indicate where it is)
Chuck: "I need to call my daughter. She seems to have forgotten me."
Me: "Oh. You know, Chuck, I spoke with your daughter this morning."
Chuck: "You did?"
Me: "Yes. She said that the bus was going to bring you here today - and it did! Isn't that great the way those busses go all over the county?"
Chuck: "But she's late."
Me: "Well. I think the bus will take you home. At least that's what your daughter told me. Did you know she arranged this lovely bus for you?"
Chuck: "She did?"
Me: "Yes, she did. What a great gal that daughter of yours is."
Chuck: "I think I should call her."
Me: "Say, which way were you headed? I think they are getting lunch ready over here. Are you hungry?"
Chuck: "No. I want to call my daughter."
Me: "Ok. Well, say, let's eat and then we can see if she’s around."
Chuck: "I really want to go home."
Me: "You want to go home."
Chuck: (by now he is at the lunch table and looking at the nice meal) "What?"
Me: "That lunch sure looks good. Did you want to sit here or here? Good, I’ll sit next to you here."
Eventually Chuck has forgotten the phone in light of the sight and smell of lunch.

Validation Therapy Resources (off-site links):
- About Naomi Feil (from the Validation Training Institute)
- The Validation Training Institute
- Principles of Validation (adapted from Naomi Feil's book)
- The Validation Breakthrough: Simple Techniques for Communicating with People with Alzheimer's-Type Dementia (link to Amazon.com with 23 pages of excerpts and indexes)

Related Articles (from ElderCare Online and ALZwell):
- Management of Agitation Behavior
- Managing Behavior Problems
- When Your Loved One Resists Care
- Maintaining Selfhood and Dignity in Patients With Alzheimer's Disease
- Edyth Ann's Caregiving Tips

Recommended Reading (from our Bookstore):
- The Alzheimer's & Dementia Care Bookshelf
- The Validation Breakthrough: Simple Techniques for Communicating with People with Alzheimer's-Type Dementia (link to Amazon.com with 23 pages of excerpts and indexes)
- Therapeutic Caregiving: A Practical Guide for Caregivers of People with Alzheimer's Disease by Barbara Bridges
- Alzheimer's Early Stages: First Steps in Caring and Treatment by Daniel Kuhn
- The Complete Guide to Alzheimer's-Proofing Your Home by Mark Warner
 

zan

Registered User
Jan 4, 2006
96
57
staffordshire
I feel that people with AD pick up on others emotions. If you are giving off a happy atmosphere when you visit, your Dad will sometimes pick up on that happy mood and he will be happy. Your children need as many happy memories about their Grandad as possible. Be happy and perhaps the other members of your family will see that your visits are enjoyable and fun, despite all the problems and worries that you share. You could set them an example and hope that they are able to relax and enjoy their visits and make the most of every day they spend with your Dad. Good luck, Zan
 

knackered

Registered User
Apr 8, 2008
21
Sussex
happy atmospheres

daveflowers & zan

I do agree it is important for us to provide a cheerful or happy atmosphere as dementia seems super-sensitive to atmosphere.

On those occasions yes, it can be fun to join in the imaginary scenarios- or at least not to contradict them.

But there are times when my mother's dementia tortures her. And that is sad.

At those times, i try to distract, to move her away from it. Sometimes it works, others not.

And I find her loss of ability to reason sad. Sad for me, not for her of course.

knackered
 

Margarita

Registered User
Feb 17, 2006
10,824
london
When he really belives that he is talking to family members who have passed away i ask him questions to relay on,
My mother does not talk to dead people yet or imagery people, but I as a 8 year old , shall never forget my Grandmother doing that & it scared me. That it did leave an impression of fear in me that I did not tell anyone , because it was not something to tell talk about . I don’t think my mother understood what was happening anyway . so could never talk to me about it .

I suppose if you explained to your children what happening to they granddad they may not get scared, do you ask your children how they feel when they see they Granddad taking to someone that not they

I would love to hear your thoughts as to whether my wife and I are guiding my children the right way and other peoples ways of dealing with Dementia.
How old are you children ?

I think it’s healthier to cry it Realises a lot of pent up tension fear, anger , sadness, if crying in front of your father upset your father. I would ask them please to cry in another room when they feel ready come back in. Some people do they crying in privet , while other just shower it out in front of each other .
 
Last edited:

helen.tomlinson

Registered User
Mar 27, 2008
541
River

Thank you so much for those examples of Validation Therapy. I found it most interesting and helpful and something I will copy and give to some family members and anyone else who might be interested.

I can benefit from it myself, of course, in dealing with Alan at times.

Best wishes Helen