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Things I wish I had known

Pearl Ann

New member
Jul 29, 2021
1
0
Thanks for the tip, my PWD has recently started having “I need to go NOW!” Problems when we are out , I will take this together with your advice and order waterproof mattress protector.!
My Mum is also having this issue. Is it part of her dementia ? ( she has mixed Alzheimers and Vascular)
 

Knitandpurl

Registered User
Aug 9, 2021
32
0
Lincolnshire
I wish I had known how to detect dementia;
I wish I had known how to handle the ups and down when newly informed;
I wish I had known what legal steps one should take for the person with dementia;
I wish I had known how to handle loosing your love one while they are with you everyday;
I wish I had known how to deal with family members that knows best what and how things should go and they are never there to assist;
I wish I had known how to balance being a care giver and the bread winner of the family:
I wish I have known how not to take the rejection, insult and disrespect personalty from my demented husband;
I am still in this situation and I would like to say this forum and you all comments and contribution gives me strength, courage and determination to continue. Thank you.
Hi Aricar Your ‘wishes’ definitely ring a lot of chords- today especially about how hard it is to lose the person you love while they are still with you. I find it hard to accept how ‘sly’ my husband can be, he out right lies to me. My daughter (not his) says he always was and I just never saw it- that hurts too. I am a new member too, and like you am finding this forum a lifeline.
 

Knitandpurl

Registered User
Aug 9, 2021
32
0
Lincolnshire
My Mum is also having this issue. Is it part of her dementia ? ( she has mixed Alzheimers and Vascular)
I’m not sure Pearl Ann, but reading all the posts I thinknn be it must be- I keep telling my husband it is due to his medication. At the moment that is helping make it more bearable for him.
 

Dimpsy

Registered User
Sep 2, 2019
1,875
0
I wish I didn't get so angry, some days not too often, I get so angry and stupidly get angrier for being angry. I am trying to learn to leave the situation alone but changing a habit as you all know is hard.

Re. bed wetting I bought a waterproof from Dunelm fits great. I was told about Kylie sheets could not get them but Amazon or Ebay took me to another answer looks very similar to K sheets supposed to absorb a lot. A couple of nights ago we had a little accident the pants got quite wet, not pulled down far enough, and hubby sat on the bed in them on the sheet and the Sheet does absorb so the bedding was a little damp but not enough to have to change it in the middle of the night. They also do seat pads of the same idea. I am lucky in that money is not a big worry so bought two of each so have a spare for when needed.
Dunelm also sell duvet and pillow protectors, great at keeping all the bulky bedding dry.
I never did understand how, in the later stages, mum could get up to spend a penny in the middle of the night and still wake up in a soaking wet bed.
 

Hippo

New member
Dec 16, 2019
1
0
I wish I’d known about the organisation ‘We Care home improvements’. They are specialists in advising and getting the job done
 

mickeyplum

Registered User
Feb 22, 2018
189
0
Amen! I definitely am finding my voice now rather than keeping or at least trying to keep the peace.
I wish I'd known as I became less of a wife, how much my mothering instincts would have to kick back in.
I wish I'd found Talking Point at the beginning of all this.
I wish I didn't feel sorry for myself when concerned people alwasy ask how he's doing but not how I'm doing. Gosh I sound like Megham M. don't I?
 

electra2008

Registered User
May 4, 2019
13
0
I wish I had been told that a sudden drop in mental capacity was likely due to a urinary tract infection (and that UTI's are very common). I wish I knew about D-mannose to treat it or as a maintenance dose to prevent it. (Google it!) I wish I knew how to navigate the 'care' system. It is hard to find a really good agency, and good live-in carers are like hen's teeth- trust your instincts! If you don't like an agency, move on, there are plenty out there. A poor agency won't improve. I remember talking to a friend who cared for her mother for 5 years and I asked her why she had so little time off- she said that every time she had care cover to get away, something would happen to her mother... It's true. I am experiencing the same thing. BUT you must still get away, don't wait until you are desperate! Your own health and sanity is equally important. I wish someone had explained to me how to navigate the mine-field of incontinence, both urinary and faecal. The council will give you free pads but it is trial and error as to which work for your loved one. The free pads can be difficult to fit- look online at the videos available, they do help.
Do your own research on a problem if you have the time and energy- I try to understand why something is happening and what the options are to deal with it- the accepted wisdom may not be the best in your case.
Try to create a special moment for your loved one each day, and make time for yourself too.
The rest I am still learning.....!
Or low soodium
I was flooding hubby with liquid as I thought it was the correct thing to do for suspected UI
Dr said 1500 ml max until the blood test came back and that was what was wrong with “D” I had been Washing the sodium out of his system
 

electra2008

Registered User
May 4, 2019
13
0
I wish I'd known as I became less of a wife, how much my mothering instincts would have to kick back in.
I wish I'd found Talking Point at the beginning of all this.
I wish I didn't feel sorry for myself when concerned people alwasy ask how he's doing but not how I'm doing. Gosh I sound like Megham M. don't I?
Got to remember that “a MM moment”🌸🌺🌸
 

Hazel63

Registered User
Aug 9, 2021
32
0
I wish I had known that this forum and helpline existed. I spent many months talking to Gp's and social workers who often gave me no help or support. Don't know what I'd have done without it. I'll be forever grateful 🙏
 

Tina130

New member
Aug 27, 2021
3
0
Hi, the following is the latest evolution of the “FYI - Sharing Impactful ALZ Lessons Learned” note I’m sending to a VERY limited group of people who interact with my wife to help them help us minimize stressful situations.
⬇️
My wife was diagnosed with ALZ in 2013………It IS what it is!

To live our lives as normally as possible, it’s essential we make you aware of a few things about ALZ. Our goal is to do everything we can and want to do and ENJOY life the best we can each and every day. 🛑Full STOP🛑

The fact of the matter is that I now deal with all problems following my blind mom’s advice about attitude which I’ve shared with many others including a 16 year old World Record Setting Gold Medal Winning Paralympic Swimmer, Anastasia Pagonis (via Instagram) who recently totally lost her sight. My mom lost hers when she was 26 and I was five. The ultimate optimist, mom raised me with little or no help, shopped, cooked, took public transportation and did other things you would not think a blind person could do.

Mom’s mantra was “Do the best you can with what you’ve got”
The best advice mom ever gave me, which I remember being the key to how she lived her life follows.

ATTITUDE is a little thing that MAKES A BIG DIFFERENCE
. The fact is you can’t control what you can’t stop. You CAN control your attitude. Your attitude defines every day. If you can’t change your fate, change your attitude.

Because ATTITUDE IS EVERYTHING, my mom used to tell me “Remember, it’s not what you say. It’s what is heard, when it’s heard and what other factors are effecting us at that specific time. It’s critical that you watch your tone or people simply may not listen to you making it impossible to communicate with them.”

Here’s Anastasia’s response to the message I shared with her ⤵️

View attachment 64825
And Anastasia is right. I continually share my mom’s advice with my wife and doing so demonstrably makes our life easier and more enjoyable.

LESSON LEARNED: Stay POSITIVE ‼️ Your life too will be easier and more enjoyable.

The fact is I’m beyond grateful to my mom. As we go through the Pandemic and it’s aftermath impacts on all of us, I try every day to follow her advice. AND I try to pay her wisdom forward and hope you will too.

And now I’ll share some ALZ unique observations I’ve made being my wife’s care partner for the past 8+ years with Dr. David Watson’s much appreciated advice.

KEY ASSUMPTIONS included in LESSONS LEARNED discussed with and approved by Dr. Watson:

Lesson 2: Don't interrupt - there always has been/will be a high probability of conflict and stress when those with ALZ feel disrespected for ANY reason including being interrupted or feeling talked down to.

Lesson 3: AVOID CONFLICT. When anybody with ALZ becomes upset, their ability to remember and reason temporarily declines more. In itself, that’s stressful.

Lesson 4: When anyone is tired or not feeling well, their ability to function and reason also temporarily worsens

BOTTOM LINE: Because stress irreversibly kills brain cells, I always try to choose the less stressful alternative action. Being human, sometimes I am wrong so I try to change the focus when I notice the person I’m caring for getting upset, tense, or confused.

What we can do, when we see her get upset, tense and confused is, per Doctor Watson, try to change the focus. It is essential to keep in mind the Stressors that are impacting her at any point in time because when anybody
with ALZ becomes upset, their ability to remember and their ability to reason
temporarily declines more. In itself, that’s stressful.

Because her ALZ doctor suggested I share things about her situation only when I strongly feel specific people need to know specific things to protect her and/or make her life easier, I have been sending customized versions of this note, without my wife’s knowledge. Please honor her wish to be private. It will stress her if you don’t.

We are incredibly lucky to have a man of our ALZ doctor’s caliber help us on my wife and my uncharted and challenging journey. Drawing upon his wisdom and 25+ years of experience has proven beyond invaluable. From him, I have learned I must attempt to choose the least stressful alternative whenever a short-term choice needs to be made because stress irreversibly kills brain cells. It’s the prudent thing to do. And I will not knowingly deviate. Ever.

This is worth repeating: BOTTOM LINE, I try to change the topic when I notice my wife getting upset, tense, or confused. I’m hopeful others in her life take the same approach. If I had the advice found below when my wife was diagnosed with ALZ 8+ years ago, our lives would have been much easier. But I didn’t. And I was unaware of these key lessons learned by other care partners before me and shared in this note.

Again, our goal is to do everything we can and want to do and ENJOY life the best we can each and every day.

I would greatly appreciate your passing these thoughts on to friends and colleagues who will benefit from having the lessons learned and shared above.

Warm regards,

Ev
(914) 733-2727
I am so pleased to read your post, I feel like a fish out of water. I have been trying to keep things normal and we always enjoyed travel. I have four holidays booked abroad to places we've been before but OH seems to be deteriorating rapidly. I took him away last year abroad and earlier this in UK but am having thoughts of cancelling holidays booked as his conditions getting worse. Maybe I will try just one and go from there.
 

Seaholly

Registered User
Oct 12, 2020
104
0
I wish I had trusted my own judgment more and been less polite! My priority at the moment is to do all I can to make Mum's remaining time with us as comfortable and secure as I can. After that, I hope I have the energy left to help do something to raise awareness with opticians because I can't help looking back and feeling both mum and dad were massively let down and their last few years together were, effectively, all but ruined because despite yearly eye checks and mum trying to explain what was going on with the way she saw things, she was never given any other advice than to blame her age-related macular degeneration (which actually wasn't that severe)

I wish I had known (and I wish I had found the Selfish Pig's Guide to Caring sooner!) that 'The System' isn't actually a system at all and started off with more realistic expectations.

I wish I had known more about dementia before mum was diagnosed and nobody in the family wanted to believe there was a problem, because I took all mum's hurtful comments and challenging behaviour personally at first and actually began to feel maybe mum had always just resented and sometimes even hated me!

Most of all, I wish I knew that although things would never be the same, that we'd still have so many happy times and that I've been right to stick to my guns and keep getting stronger for her. We're at a point now where we both know there will be bad days and thankfully, mum can't remember a thing about them. We're even at a place where she and I can laugh at some of the 'angry toddler' things she's said at those times.

One thing I am so thankful for that sounds a bit odd, but it's proved so true, is something a lecturer said at agricultural college many years ago. Axle-grease and udder-grease don't mix :D That's the best bit of advice because it has helped me accept that in caring for our PWD, we all have different skills to bring to the party and different areas where we need to take a deep breath and accept other people as they are and appreciate what they can do, rather than get frustrated and angry about what they can't provide.

I'm a stockperson through and through! I work on observation and looking out for changes in behaviour and physical condition. I care about comfort, warmth, dry bedding, company etc. Perhaps just as importantly, I am utterly un-phased by bodily functions!!!

My brother is a machinery man! This means he works less on empathy and more on process. If mum can manage a task one day, it isn't logical if she can't manage it the next.........so he puts this down to women being illogical creatures anyway :D He really is freaked out by the whole toilet-thing and his reasoning is to do what is most convenient for himself and as long as he has the physical strength to keep mum upright, that's fine! BUT, I couldn't manage without him! He's got his life running like clockwork and no matter how much I rant at him, he shrugs it off and keep on going.

The point is that we've learned to work as a team and caring for a PWD, you need that combination of skills. You also need to spot who is udder-grease and who is axle-grease and work out how best to deploy them (without causing a major family diplomatic incident!!!)
 

Tomtit

New member
Sep 1, 2021
6
0
For past year the GP will only do consultations by phone so maybe keeping away for getting told you have dementia is wisest thing is not to tell the GP that way life can continue as normal
 

Shedrech

Volunteer Moderator
Dec 15, 2012
10,767
0
Yorkshire
hello @Tomtit
a warm welcome to DTP
I believe more GPs are holding face to face consultations, so why not ask specifically for one now, letting them know that you have concerns that you need to discuss directly and have waited during the 'covid' months
it's possible that something else might be causing any symptoms, maybe vitamin B12 deficiency, or stress, and a blood test can detect any signs of some causes so they can be treated
there's no reason why life can't continue as you wish should a diagnosis be made ... for instance, it isn't necessarily the case, as some worry, that driving needs to stop
a diagnosis just gives some explanations for symptoms that may be causing concern and some meds may be prescribed that can help with the symptoms ... it's also useful to have a note on medical records so that GP etc know to be aware of symptoms and meds to help give support
sometimes family and friends have noticed some things, and a diagnosis can help them understand and be able to offer support when it's wanted
it's a reminder, too, that having Lasting Powers of Attorney in place is a good idea (worth doing by all adults for 'just in case') and making sure a will is up to date
maybe make an appointment and have a chat with the GP to set your mind at rest
 

Tomtit

New member
Sep 1, 2021
6
0
  • Hello thanks for email I’m only trying to see if I could actually get some information from a person who has been diagnosed with dementia and how they themselves have managed,
  • I was looking at comments on ( Things I wish I had known ) but I’m not sure if the comments are from people with dementia or a career.
  • Re: B12 well I have them every 12 weeks now my next is due on Monday 6th Sept I also have heigh blood pressure and take medication , I had to stop driving for a month for another medical issue when I read some of the problems and restrictions I holding off mentioning anything to a GP for few years yet
 

Mrs Humphrey

Registered User
May 14, 2021
35
0
where do I buy a plastic double sheet to put between the sheet and the mattress? i have a mattress protector but it's not waterproof I don't want my huiband to lie directly onto a plastic sheet ..just need to get a plastic protector sheet for the matress.
 

Emmcee

Registered User
Dec 28, 2015
120
0
Practical stuff is most important

such as trying - as a carer relative - to prepare for the stages of dementia
I hit a wall when trying to do this with my late mum - so I missed out noticing certain effects of the decline from walking with a frame to wheelchair to being bedridden . I wasn’t prepared for this transition and should have been .

I wish I’d known about the dementia UK helpline and their admiral nurses - specialists in dementia .
As a newly retired, health care professional, I wish I had realised at an earlier stage in my career how little many professionals actually know/understand and how one can actually learn the most from people/ families etc who are actually living with or affected by dementia. If I had to make one recommendation, it would be for those who really know the most, to educate the professionals.
 

Emmcee

Registered User
Dec 28, 2015
120
0
where do I buy a plastic double sheet to put between the sheet and the mattress? i have a mattress protector but it's not waterproof I don't want my huiband to lie directly onto a plastic sheet ..just need to get a plastic protector sheet for the matress.
You can buy Kylie bed pads in double size. They are available online or via some chemists. They aren't plastic but rest on top of your sheets and are washable. (It's suggested that you have two - one to use whilst the other one is being washed.) The advantage of the Kylie over a plastic sheet is that you shouldn't have to wash your sheet every day.
 

lollyc

Registered User
Sep 9, 2020
420
0
I wish I had trusted my own judgment more and been less polite! My priority at the moment is to do all I can to make Mum's remaining time with us as comfortable and secure as I can. After that, I hope I have the energy left to help do something to raise awareness with opticians because I can't help looking back and feeling both mum and dad were massively let down and their last few years together were, effectively, all but ruined because despite yearly eye checks and mum trying to explain what was going on with the way she saw things, she was never given any other advice than to blame her age-related macular degeneration (which actually wasn't that severe)

I wish I had known (and I wish I had found the Selfish Pig's Guide to Caring sooner!) that 'The System' isn't actually a system at all and started off with more realistic expectations.

I wish I had known more about dementia before mum was diagnosed and nobody in the family wanted to believe there was a problem, because I took all mum's hurtful comments and challenging behaviour personally at first and actually began to feel maybe mum had always just resented and sometimes even hated me!

Most of all, I wish I knew that although things would never be the same, that we'd still have so many happy times and that I've been right to stick to my guns and keep getting stronger for her. We're at a point now where we both know there will be bad days and thankfully, mum can't remember a thing about them. We're even at a place where she and I can laugh at some of the 'angry toddler' things she's said at those times.

One thing I am so thankful for that sounds a bit odd, but it's proved so true, is something a lecturer said at agricultural college many years ago. Axle-grease and udder-grease don't mix :D That's the best bit of advice because it has helped me accept that in caring for our PWD, we all have different skills to bring to the party and different areas where we need to take a deep breath and accept other people as they are and appreciate what they can do, rather than get frustrated and angry about what they can't provide.

I'm a stockperson through and through! I work on observation and looking out for changes in behaviour and physical condition. I care about comfort, warmth, dry bedding, company etc. Perhaps just as importantly, I am utterly un-phased by bodily functions!!!

My brother is a machinery man! This means he works less on empathy and more on process. If mum can manage a task one day, it isn't logical if she can't manage it the next.........so he puts this down to women being illogical creatures anyway :D He really is freaked out by the whole toilet-thing and his reasoning is to do what is most convenient for himself and as long as he has the physical strength to keep mum upright, that's fine! BUT, I couldn't manage without him! He's got his life running like clockwork and no matter how much I rant at him, he shrugs it off and keep on going.

The point is that we've learned to work as a team and caring for a PWD, you need that combination of skills. You also need to spot who is udder-grease and who is axle-grease and work out how best to deploy them (without causing a major family diplomatic incident!!!)
Wholeheartedly agree about expectation. Having had relatives with cancer - where you are beating help off with a stick - I stupidly thought dementia would be the same.
Best things I have found have been this forum , and The Selfish Pig's Guide - but wish it had been at the beginning, not 4years in.
 

robertrichards4

Registered User
Oct 4, 2021
10
0
where do I buy a plastic double sheet to put between the sheet and the mattress? i have a mattress protector but it's not waterproof I don't want my huiband to lie directly onto a plastic sheet ..just need to get a plastic protector sheet for the matress.
Kylie you can buy online at any store. Just choose the price. They are soft and not as plastic
 

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