Things I wish I had known

[Mum&me]

Hi

I have been chatting to people lately, both in TP and outside, and one thing I heard a few times is “I wish I’d known about…..earlier” or “if I had been told…. I wouldn’t have…..”.

So I was wondering if members would be willing to put down their own “if only”s on here? It could be helpful to a lot of people (myself included, I’m sure) to read in one thread other members’ advice on things it’s good to know about early on, the good and/or bad resources out there or things no one will tell you but you found out for yourself that others might find useful.

Any thoughts?

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 .

 

[Rusty26]

I'm glad somebody told me about a book called 'Contented Dementia' It made dealing with difficult situations alot easier.

Thank you I’ve been looking for something that might fill the gaps in mine and my sisters knowledge I’ve order this book now.

 

[Janey B]

I wish I had known that my OH’s obsession with sex and ladies on the internet was a symptom of Dementia.
Was so hurt and angry ?

 

[canary]

I wish I had known that my OH’s obsession with sex and ladies on the internet was a symptom of Dementia.
Was so hurt and angry ?

I knew it was a symptom of dementia and I was still hurt and angry...............
don't beat yourself up over it

 

[k.woodley]

I wish I had known that my family would not believe the caring I gave to my aunty - I should have kept a notebook/diary - this would have been a powerful tool against their claim I did 'nothing for her'. They only saw her at intervals and so never saw the 'full story' of her decline. I was there on a daily basis I should have recorded the verbal abuse I received and the dates.. I only found out later that they were financially abusing her because they kept it so well hidden.

 

[k.woodley]

I wish I'd known - and therefore been prepared for - the family tensions and divisions which arise from dealing with a family member suffering from dementia. Sadly, this appears to be very common.

Keep a diary/notebook - this is a powerful tool when family try to disagree with you - particularly record verbal abuse and your hours/tasks

 

[Carolyn Joy]

Hi

I have been chatting to people lately, both in TP and outside, and one thing I heard a few times is “I wish I’d known about…..earlier” or “if I had been told…. I wouldn’t have…..”.

So I was wondering if members would be willing to put down their own “if only”s on here? It could be helpful to a lot of people (myself included, I’m sure) to read in one thread other members’ advice on things it’s good to know about early on, the good and/or bad resources out there or things no one will tell you but you found out for yourself that others might find useful.

Any thoughts?

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.....!

 

[lollyc]

I wish I'd known about TP sooner.

I wish I'd realised that this isn't cancer, so you don't get any help. However much you are told that "we are here to help you", this actually means we'll talk to you on the phone and tell you how well you're doing, but we'll do ****** all to help you practically.

I wish I was more patient / kinder.

I wish I was the carer my Mum would like me to be.

I wish I'd read The Selfish Pig's Guide to Caring sooner (thanks TP for that one.)

I wish I'd realised just how destructive dementia can be. I never imagined I would feel so angry and resentful towards a person I loved so much.

 

[Denisel64]

My mum and I had a fall out many years ago and I only found out recently that mum has Alzheimers......so yes I wish I had known this would happen and I would have ignored her nastiness not knowing this was the onset, I would have taken it on the chin and got on with it. Hindsight is a wonderful thing, it can also make you beat yourself up and theres no point in that, life is difficult enough especially when we are all dealing with this awful illness. Kindest wishes to you all.

 

[Duggies-girl]

I wish that I had known just how selfish and greedy some family members can be and I wish that I had realised exactly what I was getting into and what it would cost me, financially, emotionally, mentally and physically. In hindsight I would have not been walked over by other family members and a few home truths would have been hammered home. Too late now but I should have been a lot stronger.

 

[Upd8]

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 ⤵️

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

 

[Evergreen50]

My mum and I had a fall out many years ago and I only found out recently that mum has Alzheimers......so yes I wish I had known this would happen and I would have ignored her nastiness not knowing this was the onset, I would have taken it on the chin and got on with it. Hindsight is a wonderful thing, it can also make you beat yourself up and theres no point in that, life is difficult enough especially when we are all dealing with this awful illness. Kindest wishes to you all.

Yes, you are right " do not beat yourself up". Mum's and Daughters never fall out, they do however take a break from each other. I had a similar experience and I had to learn to let go of the past or it does ruin tomorrow.

Not all relationships are the rosy image we all wish for. One thing I do now is to recall there were good memories too. Towards the end of my Mum's life, I visited her in the care home. Not recognizing myself and hubby she asked us if we had seen our **** (me) I was able to say yes, she sends her love and will be in to see you tomorrow. We may have been apart and we certainly did not like each other but the love & bond remained. X

 

[Knitandpurl]

I wish I’d known that relatively early on, and without warning, my PWD would unknowingly wet the bed. I would have protected the mattress sooner!

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.!

 

[electra2008]

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.

 

[Jaded'n'faded]

This is an impossible one but I wish I'd known when it would end. Being stuck in the middle of it all, seeing the poor quality of life my mother had in her last three years but not knowing if it would be one year or ten - that was the hardest thing.

 

[Duggies-girl]

This is an impossible one but I wish I'd known when it would end. Being stuck in the middle of it all, seeing the poor quality of life my mother had in her last three years but not knowing if it would be one year or ten - that was the hardest thing.

When it would end, yes that was the big one. I would give myself a date for 6 months time and when the date came I would set another one. It would be so much easier if there was a end date to work towards however far away it was.

 

[Frank24]

I wish I had known that people that were not doing the caring didnt get to judge or tell me how to do things.
I wish i'd have said ''Crack on then'' more times ( I never did)

This!!! XXX

 

[Frank24]

I wish I had known that you didnt have to use a solicitor to get POA and how important it was to get it.
Mum absolutely refused to go to a solicitor, but I might have been able to get POA with her at home on a good day.
Unfortunately I eventually had to apply for deputyship which was a right faff.

Ugh. Total faff. I keep trying ti impress on my husband and BIl and SIS's that they need to do this right away for their Dad who is in and out and out of hospital, in his 90's and becoming confused and suspicious... not a good combination of factors but still the procrastination continues. I almost ended up without it, but managed to get it sorted by the skin of my teeth, my situation being complicated by family discord so I had to go the legal solicitor route and get mum certified as having capacity by the doctor from the memory clinic it was a close shave! So I would agree POA is vital and key..

 

[Arlcar]

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.

 

[thegoodtwin]

I wish I had known how intimately entwined joy and sorrow really are.