• All threads and posts regarding Coronavirus COVID-19 can be found in our area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Just plain scared. It's a lot to handle

Happy Hampton

Registered User
Feb 22, 2022
96
0
The following piece was posted a while ago on TP and made a big impression on me. It is something I have referred to time after time and tried hard to follow.

We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if it had a Thread of it`s own.

It`s a tall order but an excellent guideline.


Compassionate Communication with the Memory Impaired

by Liz Ayres
A Volunteer of the Alzheimer's Association and Former Caregiver

DON'T
Don’t reason.
Don’t argue.
Don’t confront.
Don’t remind them they forget.
Don’t question recent memory.
Don’t take it personally.



DO
Give short, one sentence explanations.
Allow plenty of time for comprehension, then triple it.
Repeat instructions or sentences exactly the same way.
Eliminate 'but' from your vocabulary; substitute 'nevertheless.'
Avoid insistence. Try again later
Agree with them or distract them to a different subject or activity
Accept blame when something’s wrong (even if it’s fantasy).
Leave the room, if necessary, to avoid confrontations.
Respond to feelings rather than words
Be patient and cheerful and reassuring. Do go with the flow.
Practice 100% forgiveness. Memory loss progresses daily.
My appeal to you: Please.elevate your level of generosity and graciousness.



Remember

You can’t control memory loss, only your reaction to it. Compassionate communication will significantly heighten quality of life.

They are not crazy or lazy. They say normal things, and do normal things, for a memory impaired, dementia individual. If they were deliberately trying to exasperate you, they would have a different diagnosis. Forgive them ... always. For example: they don’t hide things; they protect them in safe places... And then forget. Don’t take ‘stealing’ accusations personally.

Their disability is memory loss. Asking them to remember is like asking a blind person to read. (“Did you take your pills?” “What did you do today?”) Don’t ask and don’t test memory! A loss of this magnitude reduces the capacity to reason. Expecting them to be reasonable or to accept your conclusion is unrealistic. (“You need a shower.” “Day care will be fun.” “You can’t live alone.”) Don’t try to reason or convince them. Give a one sentence explanation or search for creative solutions. Memory loss produces unpredictable emotions, thought, and behavior, which you can alleviate by resolving all issues peacefully. Don’t argue, correct, contradict, confront, blame, or insist.

Reminders are rarely kind. They tell the patient how disabled they are – over and over again. Reminders of the recent past imply, “I remember, I’m okay; you don’t, you’re not. ”Ouch! Refer to the present or the future. (If they’re hungry, don’t inform them they ate an hour ago, offer a snack or set a time to eat soon.) They may ask the same question repeatedly, believing each time is the first. Graciously respond as if it’s the first time. Some days may seem normal, but they are not. They live in a different reality. Reminders won’t bring them into yours. Note: For vascular dementia, giving clues may help their recall. If it doesn’t work, be kind ... don’t remind.

Ethical dilemmas may occur. If, for instance, the patient thinks a dead spouse is alive, and truthful reminders will create sadness, what should you do? To avoid distress, try these ways of kindness: 1) distract to another topic, or 2) start a fun activity, or 3) reminisce about their spouse, “I was just thinking about ______. How did you two meet?” You might even try, “He’s gone for a while. Let’s take our walk now.”

Open-ended questions (“Where shall we go?” “What do you want to eat/wear/do?”) are surprisingly complex and create anxiety. Give them a simple choice between two items or direct their choice, “You look great in the red blouse.”

They are scared all the time. Each patient reacts differently to fear. They may become passive, uncooperative, hostile, angry, agitated, verbally abusive, or physically combative. They may even do them all at different times, or alternate between them. Anxiety may compel them to shadow you (follow everywhere). Anxiety compels them to resist changes in routine, even pleasant ones. Your goal is to reduce anxiety whenever possible. Also, they can’t remember your reassurances. Keep saying them.

Examples

Don’t reason

Patient What doctor’s appointment? There’s nothing wrong with me.”
Don’t (reason) “You’ve been seeing the doctor every three months for the last two years. It’s written on the calendar and I told you about it yesterday and this morning.”
DO (short explanation) “It’s just a regular check-up.”
(accept blame) “I’m sorry if I forgot to tell you.”

Don’t argue

Patient “I didn’t write this check for $500. Someone at the bank is forging my signature.”
Don’t (argue) “What? Don’t be silly! The bank wouldn’t be forging your signature.”
DO (respond to feelings) “That’s a scary thought.”
(reassure) “I’ll make sure they don’t do that.”
(distract) “Would you help me fold the towels?”

Don’t confront
Patient “Nobody’s going to make decisions for me. You can go now ... and don’t come back!”
Don’t (confront) I’m not going anywhere and you can’t remember enough to make your own decisions.”
DO (accept blame or respond to feelings) “I’m sorry this is a tough time.”
(reassure) “I love you and we’re going to get through this together.”
(distract) “You know what? Don has a new job. He’s really excited about it.


Don’t remind them they forget
Patient: “Joe hasn’t called for a long time. I hope he’s okay.”
Don’t (remind) “Joe called yesterday and you talked to him for 15 minutes.”
DO (reassure) “You really like talking to Joe, don’t you?”
(distract) “Let’s call him when we get back from our walk.”



Don’t question recent memory

Patient “Hello, Mary. I see you’ve brought a friend with you.”
Don’t (question memory) “Hi, Mom. You remember Eric, don’t you? What did you do today?”
DO (short explanation) “Hi, Mom. You look wonderful! This is Eric. We work together.”



Don’t take it personally!

Patient “Who are you? Where’s my husband?”
Don’t (take it personally) “What do you mean – who’s your husband? I am!”
DO (go with the flow, reassure) “He’ll be here for dinner.”
(distract) “How about some milk and cookies?” .. Would you like chocolate chip or oatmeal?



Do repeat exactly

Patient "I'm going to the store for a newspaper."
Don’t (repeat differently) "Please put you shoes on."
"You'll need to put your shoes on."
DO (repeat exactly) "Please put your shoes on."
"Please put your shoes on."



Do eliminate "but", substitute "nevertheless"
Patient "I'm not eating this. I hate chicken."
Don’t (say "but") "I know chicken's not your favorite food, but it's what we're having for dinner."
DO (say "nevertheless") "I know chicken's not your favorite food, (smile) nevertheless I'd appreciate it if you'd eat a little bit."

Used with permission from Ellen Warner at Ageless Design
__________________
__________________

As per requests from members: another source of this information is here

http://www.ocagingservicescollabora...te-Communication-with-the-Memory-Impaired.pdf
Thanks so much for your share. I have Terminal Brain Disease. I can’t find any support here. The only posts I see are how horrible we are. Then the next post is how much worse their We is compared to your We. Where’s my support? I came here because it said it’s a support group.
 

Happy Hampton

Registered User
Feb 22, 2022
96
0
I disagree that this (compassionate communication) isn’t for All PWD. Dementia is dementia. Alzheimer’s is the most common. All dementia lead to the same road.
 

Happy Hampton

Registered User
Feb 22, 2022
96
0
So true about the anger and fear. We are just plain scared. It’s a lot to handle. How do you guys think I feel ? Oh, no one ever asked. All y’all talk about is how horrible We are. Can you guess how we feel? How about me reading all this stuff about as soon as my (fill in the blank) passes I was so relieved. I took a vacation. Etc.
I’ve educated myself, my husband and our daughter on Fatal Brain Failure, so they know what to expect. I know what my husband and 15 year old will go through in the future and reading all the posts only reinforces that. Sad. It just took me 3 minutes to plug in my charger. That’s everything I touch. There are so many small things going on with us that you don’t know about. Because were embarrassed to tell it. How do you guys think it feels to literally feel everything you know slipping away.
 

canary

Registered User
Feb 25, 2014
18,480
0
South coast
Thanks so much for your share. I have Terminal Brain Disease. I can’t find any support here. The only posts I see are how horrible we are. Then the next post is how much worse their We is compared to your We. Where’s my support? I came here because it said it’s a support group.
Hi Jenna @Happy Hampton
You have been supporting so many people here - I have welled up at times because your posts explaining what it is like for someone with dementia have been so helpful.
Of course you deserve some support yourself. Tell us what it is that you need support over?
 

jennifer1967

Registered User
Mar 15, 2020
11,788
0
Southampton
So true about the anger and fear. We are just plain scared. It’s a lot to handle. How do you guys think I feel ? Oh, no one ever asked. All y’all talk about is how horrible We are. Can you guess how we feel? How about me reading all this stuff about as soon as my (fill in the blank) passes I was so relieved. I took a vacation. Etc.
I’ve educated myself, my husband and our daughter on Fatal Brain Failure, so they know what to expect. I know what my husband and 15 year old will go through in the future and reading all the posts only reinforces that. Sad. It just took me 3 minutes to plug in my charger. That’s everything I touch. There are so many small things going on with us that you don’t know about. Because were embarrassed to tell it. How do you guys think it feels to literally feel everything you know slipping away.
i dont think we are ignoring your suffering but all we have is the experience of caring. unless you have dementia, its very hard to know what that feels like. i can only tell it as i experience it caring for my husband. i cant make assumptions about how it feels to you as that would be a disservice to you. why not tell us how it is so we can have an insight of how it is for you. we all need space to say it as it is carer or person with dementia.
 

Happy Hampton

Registered User
Feb 22, 2022
96
0
Hi Jenna @Happy Hampton
You have been supporting so many people here - I have welled up at times because your posts explaining what it is like for someone with dementia have been so helpful.
Of course you deserve some support yourself. Tell us what it is that you need support over?
Thank you, Canary but I feel like when I tell people what they’re experiencing is completely normal, they still carry on about how awful their lives are being a carer. And I feel terrible for my family. My 15 year will lose a mother, my husband will lose his wife. I feel for carers and I just feel a need to say things that may help them but maybe I’m not projecting myself properly. I never know. I’m the person who wants to save everyone. I raised my younger siblings so I’m a caretaker by nature.
 

Happy Hampton

Registered User
Feb 22, 2022
96
0
i dont think we are ignoring your suffering but all we have is the experience of caring. unless you have dementia, its very hard to know what that feels like. i can only tell it as i experience it caring for my husband. i cant make assumptions about how it feels to you as that would be a disservice to you. why not tell us how it is so we can have an insight of how it is for you. we all need space to say it as it is carer or person with dementia.
I don’t think I said ignored but I’m sure that’s the way it came across. I’ve posted many times what it’s like. Until now, I’ve never gotten a response I’m your mum, I’m your husband, your wife, your friend, Im your dad, I’m your daughter. I’m all those people who have Fatal Brain Disease. I’m all your loved ones who are suffering. I see this disease progressing at an alarming speed. I’m scared to death!, Literally. 😂
I try my best to keep a grip on positivity. It’s all I have. I haven’t said the words I’m scared and don't want to die but once, right after my diagnosis. It hurt my husband so much I’ll never say it again. I’m only 63 but I have a DNR (for any reason) Here’s a good example, I just looked at DNR and was like, what does that mean. And that was a minute after typing it.
Thank you for your care.
 

Banjomansmate

Registered User
Jan 13, 2019
4,082
0
Dorset
So true about the anger and fear. We are just plain scared. It’s a lot to handle. How do you guys think I feel ? Oh, no one ever asked. All y’all talk about is how horrible We are. Can you guess how we feel? How about me reading all this stuff about as soon as my (fill in the blank) passes I was so relieved. I took a vacation. Etc.
I’ve educated myself, my husband and our daughter on Fatal Brain Failure, so they know what to expect. I know what my husband and 15 year old will go through in the future and reading all the posts only reinforces that. Sad. It just took me 3 minutes to plug in my charger. That’s everything I touch. There are so many small things going on with us that you don’t know about. Because were embarrassed to tell it. How do you guys think it feels to literally feel everything you know slipping away.
Yes, I was relieved when my Banjoman died because it meant he was no longer suffering from the bloody awful effect that Lewy Body Dementia had on him. The loss of his mental and physical abilities that left him incapable of doing virtually anything for himself.
I suspect the majority of people on Talking Point are carers because we are the ones trying to find the answers to the problems that dementia has thrown at both us and our loved ones . Sadly we are the ones that have to cope because, like you, our loved ones can no longer do the things that once were simple, everyday activities . As this gets worse so the pressure on us as carers increases. I did not live with my Banjoman so I was spared the unremitting pressures that many members here have/had to contend with. I think I understand your viewpoint that you are the ones who are experiencing dementia and we, as carers, sound as though we do nothing but complain about the difficulties that looking after you bring, but we are scared for both you and ourselves as we see you diminishing before our eyes and know that eventually we will lose you completely. We are drained physically and emotionally both from caring and from the loss of someone who meant so much to us.

The contributors to Talking Point span both sides of the dementia divide and as carers we can learn from those members who have received a diagnosis of some form of dementia/Alzheimer’s and who are still actively able to communicate their thoughts on various aspects of these diseases but every day there are new carers who come here seeking answers to the same problems, many with the question of how to get their loved one to see a Dr. because they either refuse to go because they realise there is something wrong or because they are convinced there is nothing wrong. Because of this I am afraid you are always going to be in the minority.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
76,072
0
Kent
Thanks so much for your share. I have Terminal Brain Disease. I can’t find any support here. The only posts I see are how horrible we are. Then the next post is how much worse their We is compared to your We. Where’s my support? I came here because it said it’s a support group.


There is a lot of love on this forum @Happy Hampton. I`m sorry you don't feel supported . The support is here for you even if you haven't yet felt it.

Yes many carers do post about the difficulties they find themselves in. Many haven't had the best relationships before dementia and are finding it really difficult. Others are trying their best to manage challenging behaviours without support and are exhausted.

Then there are others who have had long and happy relationships and are heartbroken that dementia has affected all their lives in so many ways.

This is a big community with people from all walks of life. It will never be ideal but is the best many carers and sufferers have found.

You have a great deal of insight into your dementia and a supportive family. Your posts will have helped carers and sufferers alike.

I`m sorry you are cross with the carers on this forum. We are trying hard to be supportive
 

Happy Hampton

Registered User
Feb 22, 2022
96
0
Hi Jenna @Happy Hampton
You have been supporting so many people here - I have welled up at times because your posts explaining what it is like for someone with dementia have been so helpful.
Of course you deserve some support yourself. Tell us what it is that you need support over?
Well, I guess I vented. It sure helps to write it down. I hide things from my husband but I still need to talk about those things.
I’ve also just realized how selfish I am. I apologize. It’s the disease. We think we’re being ignored, or what we say is t validated. We BELIEVE those things. Thank God I’m still where I can process these things. I think I took the long road. I truly know this is a wonderful, helpful place full of caring people. We’re all going through the same thing. Just from a different view. ❤️🌺🌹
 

Happy Hampton

Registered User
Feb 22, 2022
96
0
Yes, I was relieved when my Banjoman died because it meant he was no longer suffering from the bloody awful effect that Lewy Body Dementia had on him. The loss of his mental and physical abilities that left him incapable of doing virtually anything for himself.
I suspect the majority of people on Talking Point are carers because we are the ones trying to find the answers to the problems that dementia has thrown at both us and our loved ones . Sadly we are the ones that have to cope because, like you, our loved ones can no longer do the things that once were simple, everyday activities . As this gets worse so the pressure on us as carers increases. I did not live with my Banjoman so I was spared the unremitting pressures that many members here have/had to contend with. I think I understand your viewpoint that you are the ones who are experiencing dementia and we, as carers, sound as though we do nothing but complain about the difficulties that looking after you bring, but we are scared for both you and ourselves as we see you diminishing before our eyes and know that eventually we will lose you completely. We are drained physically and emotionally both from caring and from the loss of someone who meant so much to us.

The contributors to Talking Point span both sides of the dementia divide and as carers we can learn from those members who have received a diagnosis of some form of dementia/Alzheimer’s and who are still actively able to communicate their thoughts on various aspects of these diseases but every day there are new carers who come here seeking answers to the same problems, many with the question of how to get their loved one to see a Dr. because they either refuse to go because they realise there is something wrong or because they are convinced there is nothing wrong. Because of this I am afraid you are always going to be in the minority.
I’m so sorry for your loss. I know it was a relief, and not to be cruel, but the sooner the better. I went through years of AD. with my mil, so I do know that side as well.
I came here for the same reasons as y’all …to find others in my situation. We’re all her for the same reason. Plus, AD people turn narcissistic. 😺. I know how I got my mil to do things she didn’t want to do. 🤡. I apologize for my rant. I’m here any time I’m needed. And sometimes when I’m not. 🤣🤣. Thank you so much.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,208
0
High Peak
Hi Jeana. I wish more people with dementia posted on these forums. But only a few do. I think you - and they - have a particular sort of dementia (or it affects you in a particular way) that allows you to have insight and awareness. As you will have read in the many posts from frustrated carers, many people with dementia lack that insight and are in complete denial that anything is wrong.

But we learn an awful lot from our precious few friends here with dementia, so I'm really glad you are here.

Actually, I can't imagine just how awful you must feel, knowing what's happening to you. Getting dementia is my worst nightmare. What can we do to support you better?
 

Happy Hampton

Registered User
Feb 22, 2022
96
0
There is a lot of love on this forum @Happy Hampton. I`m sorry you don't feel supported . The support is here for you even if you haven't yet felt it.

Yes many carers do post about the difficulties they find themselves in. Many haven't had the best relationships before dementia and are finding it really difficult. Others are trying their best to manage challenging behaviours without support and are exhausted.

Then there are others who have had long and happy relationships and are heartbroken that dementia has affected all their lives in so many ways.

This is a big community with people from all walks of life. It will never be ideal but is the best many carers and sufferers have found.

You have a great deal of insight into your dementia and a supportive family. Your posts will have helped carers and sufferers alike.

I`m sorry you are cross with the carers on this forum. We are trying hard to be supportive
I’m not cross. It’s the disease. It never crossed my mind the reason PWD aren’t 🌹here is because either they don’t accept the diagnosis or they wait too long This is very tough for me to do.
I really do understand the other side. I went through 15 years of this awful disease with my mil. But it now I see it’s not so fun on this side.
I did apologize for my lack of judgment, and it’s sincere. My emotions get whacky some times but if you guys will let me stay I’ll work on that. ☮️
 

Happy Hampton

Registered User
Feb 22, 2022
96
0
Hi Jeana. I wish more people with dementia posted on these forums. But only a few do. I think you - and they - have a particular sort of dementia (or it affects you in a particular way) that allows you to have insight and awareness. As you will have read in the many posts from frustrated carers, many people with dementia lack that insight and are in complete denial that anything is wrong.

But we learn an awful lot from our precious few friends here with dementia, so I'm really glad you are here.

Actually, I can't imagine just how awful you must feel, knowing what's happening to you. Getting dementia is my worst nightmare. What can we do to support you better?
Hi Jeana. I wish more people with dementia posted on these forums. But only a few do. I think you - and they - have a particular sort of dementia (or it affects you in a particular way) that allows you to have insight and awareness. As you will have read in the many posts from frustrated carers, many people with dementia lack that insight and are in complete denial that anything is wrong.

But we learn an awful lot from our precious few friends here with dementia, so I'm really glad you are here.

Actually, I can't imagine just how awful you must feel, knowing what's happening to you. Getting dementia is my worst nightmare. What can we do to support you better?

Believe it or not I’m at peace with it. I had a 2 month long pity party then I started making arrangements, Updating Will, Trust, Directives, etc. I sat down with my daughter to check out charter schools and we put her on a path for success plus I feel like I have some control over her future. Loss of control is big and it’s a hard thing to let go of because that means you have to admit you’re sick. I had hubs purchase additional life insurance and I’ve signed the back of my car titles. I think on this a lot and as I think of things I discuss it with hubs . By something, I mean something that needs to be done or planned for.
 

canary

Registered User
Feb 25, 2014
18,480
0
South coast
It sounds like you are really taking control of the situation Jenna - that is a lot of things organised.
But please dont get too upset when you find that things start to slip out of your control - Im afraid that it is to be expected. Really lean on your husband as he sounds a great support
 

PippaS

Registered User
Jan 3, 2022
29
0
Well, I guess I vented. It sure helps to write it down. I hide things from my husband but I still need to talk about those things.
I’ve also just realized how selfish I am. I apologize. It’s the disease. We think we’re being ignored, or what we say is t validated. We BELIEVE those things. Thank God I’m still where I can process these things. I think I took the long road. I truly know this is a wonderful, helpful place full of caring people. We’re all going through the same thing. Just from a different view. ❤️🌺🌹
I don’t think you’re selfish. I think you’re trying hard to come to terms with something really difficult and are helping us by sharing how it is for you. I’m a lot older than your daughter but I visit my Dad every day and yes, it can be difficult but it’s the highlight of my day. Maybe I am selfish but I would still rather have him here with advanced dementia than not here at all. He is my world at the moment and I am happy with that and the occasional smiles and loving responses make it all worthwhile. I read all your posts and am happy to listen to you venting as I am sure you need to. You are listened to and you are helping. Wishing you as many good days as possible.
 

Dunroamin

Registered User
May 5, 2019
259
0
UK
@Happy Hampton

I came here because it said it’s a support group.

I feel your pain. This IS a support group but the vast majority of posters are carers rather than a PWD. Therefore the vast majority of prose reflects carers often at the end of their tether and in despair at a situation they have little hope of improving.

For example, A reoccurring theme (my memory may be muddled here ) is that there are few resources for our community vs. the vast amount of research/facilities etc. for cancer patients. The bottom line is that treatment for cancer has documented, measurable (and often positive) outcomes . For the PWD there is usually little apart from a policy of containment and peer support.

The fact there is little peer support for the PWD is that not all have insight like you and I, plus the vast majority deny there is a problem and defer a diagnosis until there is obviously something very wrong.

So how do I cope? I have always been a very positive person and this helps. I don't worry about things I cannot change, I ask for help and am not ashamed of my diagnosis. I feel like a sort of ambassador for PWD as wherever I go people are aware, and I try to re educate and dismiss stereotypes.. I have joined dementia support groups. I swim in cold water outdoors twice weekly which makes me feel alive. The lifeguards are amazing and supportive to the extent I have a designated lane.

There are things happening in the world at the moment which are far more worrying than our diagnosis. I cannot do much about that either, so I continue to live in the moment.

There is something wonderful happening every day. Mine today was the heron visiting the pond and finding a particular Moby track that I had forgotten and the cherry blossom beginning to show.

My words, written with help and corrections done for me.
 

Happy Hampton

Registered User
Feb 22, 2022
96
0
I don’t think you’re selfish. I think you’re trying hard to come to terms with something really difficult and are helping us by sharing how it is for you. I’m a lot older than your daughter but I visit my Dad every day and yes, it can be difficult but it’s the highlight of my day. Maybe I am selfish but I would still rather have him here with advanced dementia than not here at all. He is my world at the moment and I am happy with that and the occasional smiles and loving responses make it all worthwhile. I read all your posts and am happy to listen to you venting as I am sure you need to. You are listened to and you are helping. Wishing you as many good days as possible
I don’t think you’re selfish. I think you’re trying hard to come to terms with something really difficult and are helping us by sharing how it is for you. I’m a lot older than your daughter but I visit my Dad every day and yes, it can be difficult but it’s the highlight of my day. Maybe I am selfish but I would still rather have him here with advanced dementia than not here at all. He is my world at the moment and I am happy with that and the occasional smiles and loving responses make it all worthwhile. I read all your posts and am happy to listen to you venting as I am sure you need to. You are listened to and you are helping. Wishing you as many good days as possible.
Im happy to know you and your dad are doing well, as much as possible, you’re a good daughter. It’s things like this that keeps me going. 🌺
 

Happy Hampton

Registered User
Feb 22, 2022
96
0
@Happy Hampton



I feel your pain. This IS a support group but the vast majority of posters are carers rather than a PWD. Therefore the vast majority of prose reflects carers often at the end of their tether and in despair at a situation they have little hope of improving.

For example, A reoccurring theme (my memory may be muddled here ) is that there are few resources for our community vs. the vast amount of research/facilities etc. for cancer patients. The bottom line is that treatment for cancer has documented, measurable (and often positive) outcomes . For the PWD there is usually little apart from a policy of containment and peer support.

The fact there is little peer support for the PWD is that not all have insight like you and I, plus the vast majority deny there is a problem and defer a diagnosis until there is obviously something very wrong.

So how do I cope? I have always been a very positive person and this helps. I don't worry about things I cannot change, I ask for help and am not ashamed of my diagnosis. I feel like a sort of ambassador for PWD as wherever I go people are aware, and I try to re educate and dismiss stereotypes.. I have joined dementia support groups. I swim in cold water outdoors twice weekly which makes me feel alive. The lifeguards are amazing and supportive to the extent I have a designated lane.

There are things happening in the world at the moment which are far more worrying than our diagnosis. I cannot do much about that either, so I continue to live in the moment.

There is something wonderful happening every day. Mine today was the heron visiting the pond and finding a particular Moby track that I had forgotten and the cherry blossom beginning to show.

My words, written with help and corrections done for me.
Yes, I really do know how tough this is for carers , as bad as it is for us, It’s worse for the carer. The support for carers is excellent, venting, getting answers, having support…by getting support to our carers ultimately helps the PWD.
Im usually a positive person and I (say) I sweat the small stuff, and for the most part, that’s true. I think I need to relate more to carers having a bad day, rather than only thinking about my bad days. I can still learn.

I think when I came here I was expecting something different. But I understand now I sincerely apologize for my insensitivity. It takes me a while to sort things out. I’m newly diagnosed and I’m scared. But my husband is scared too. This forum is helpful for me. I k ow carers are saying what is going on with them and the PWD. When you all share how you handle certain situations I pass them on to my hubs. If I know what’s coming, and so does he, at least we’ll be prepared.
Thank you for your insight. ❤️
 

Staff online

Forum statistics

Threads
124,734
Messages
1,829,085
Members
75,757
Latest member
Starlings2