What do know now that you wish you'd known then?

[sue38]

If you could go back in time to the point where you, or the person you care for, were first diagnosed what do you wish you could tell yourself?

It's now coming up to 11 years since my dad was first diagnosed with dementia and for me that was the time when we were really floundering in the dark, not doing what to do next. Although when my mum was diagnosed some 9 years later we were provided with a lot more information many people still come on to TP looking for pointers in those early days and weeks.

I thought it would be useful to compile a list for people who have just received a diagnosis. It might be practical things such as

• getting your legal affairs (will, powers of attorney) in order
• how assistive technology might help (or might not!)
• dealing with medical professionals and social services

or it might be more general things, such as

• compassionate communication
• how to plan for the future

What do you wish you'd known?

 

[karaokePete]

My OH was diagnosed recently so I'm new to the journey. However, one thing I wish I'd known earlier was the diagnosis. Our relationship was under huge strain during the last couple of years because of my wife's changed personality and behaviour. Had we had the diagnosis earlier life would have been easier as I would have known where the problem was.

My advice, FWIW, - try to get the suspected PWD to the medical people asap so that the relationship can be kept strong going into the period when the carer will need to be as loving as possible.

 

[Grannie G]

However, one thing I wish I'd known earlier was the diagnosis.

I agree with this 100%.

I`m another who thought our marriage was on the rocks even though I`d had previous experience of my mother having dementia.

I appreciate all other possibilities need to be eliminated first but we do seem to have to wait an extraordinarily long time for diagnosis.

 

[marionq]

I think this a very good topic which needs a simple, easy to read structure for future use.

You correctly started with getting your affairs in order:

Wills, POA for Finance and Health and Welfare, registered immediately. Do this online or through a solicitor.

Attendance Allowance application, followed by reduction in council tax

Bank cards removed or at least with the security numbers scratched out on the back to prevent fraud

Telephone with blocker purchased and unknown numbers, international numbers and specific dodgy callers all blocked, TPS informed, use of services such as BT Call Protect

Use of mobile phones with ability to track wanderers or GPS trackers.
Some LAs might help with these but austerity measures make this less likely

Stay in the system where possible by attending appointments and accepting help from NHS through CPNs and Falls clinic and any other bodies which are available in your area.
Remember to ask for help from the Continence clinic if the person has problems of this type.

Keep a daily diary for appointments, records of health, behaviour etc. At the back keep good notes of names, job description and organisation, phone numbers of all the people you are dealing with as this number will overwhelm you eventually. (My most useful piece of information when seeking help)

Join groups run by your local authority or Alz Soc which prevent the PWD becoming isolated or anti social and can give the carer much needed support and friendship.

Put the name of the person being cared for on the waiting list for daycentres in your area.

 

[Canadian Joanne]

I would tell myself to be more patient, to try and understand what was happening to my mother and to spend more quality time with her. I did spend a fair amount of time with her but I was often in problem-solving, chore-doing mode.

 

[marionq]

Pete and Grannyg I agree totally with the strain on marriages. We have been married for 52 years and the last decade it was under stress not because of the usual issues like money, sex or being horrible. The change in my husband's ability to make rational decisions or use logic was the straw that nearly ended this marriage. Everything stemmed from that loss.

Even now I understand what was going on it is hard to wipe out a lot of unnecessary upset

 

[lubyloo]

lubylou

My husband has been diagnosed 3.1/2 yrs, before diagnosis was sure he was starting up a relationship with someone, (altho I think that someone was probably thinking the same) but knowing him it was absurd, but now knowing the outcome it was the beginnings of AD, but also still cannot forget the turmoil it put me through.

 

[LadyA]

Yep, another who would like to have known earlier. A lot earlier. The dreadful, and very frustrating behaviour that was there for years before even I started to suspect dementia. Of course, it was several more years before he would go to a doctor.

The practical stuff, like POA, etc is fine if you can do it. But with paranoia featuring in so many people's dementia, it's not always possible.

I guess that from here, one thing I wish I had realised is that there would come a day when I would really miss having all those 100% cotton shirts to iron, and I'd miss watching those same favourite DVDs again.

 

[Scouts girl]

I know all the practical stuff is important but I wish I had been more prepared emotionally. That I had known how progressive my mum's dementia would take her from me day by day and that after only a few months she is not my lovely mum any more.

I wish I had been more patient with her in the early days before her diagnosis and then having to make the awful decision when it became too much for me to cope looking after her any more that I had to seek emergency help and move her into residential care against her wishes. If only, if only, if only. I don't think anyone can prepare themselves for the heartache and guilt that dementia brings to you and your loved one.

 

[Izzy]

Finding the link to compassionate communication information would have been useful in the early days.

https://forum.alzheimers.org.uk/sho...ionate-Communication-with-the-Memory-Impaired

 

[Bunpoots]

I wish I'd found Talkingpoint in 2007 when my mum was diagnosed. It was nine years later that I came across it. GPs should let everyone know about it and how invaluable it is as a source of information and support.

 

[Saffie]

Finding the link to compassionate communication information would have been useful in the early days.

https://forum.alzheimers.org.uk/sho...ionate-Communication-with-the-Memory-Impaired

Definitely.
Patience and understanding is what I wish I'd had in the early days.
Even though my mother had suffered from dementia, it was in the late 1970s/early 1980s and there was no understanding and no support, even the AS wasn't formed until after she had died. So I didn't learn much.

Even so, I should have been more aware when my husband started to behave oddly. I'm sure he hid so much. When I lost patience, he was not aggressive and I really have no idea how much he understood of what was happening but he must have been bewildered.
He had a number of other medical problems and maybe I was too quick to put things down to those.
Regrets, I have a few definitely.

 

[canary]

I wish I had known about "hostess mode". Mum didnt live with me and when I phoned her up or went round she seemed fine. It came as a terrible shock when she suddenly started accusing everyone of stealing, was really nasty to her friends and started wandering around at night just in her nightwear. If Id known about hostess mode I wouldnt have taken it all at face value.

 

[Rosnpton]

I wish I'd known earlier not to take it personally when told I'm rubbish/got it wrong etc etc.im blamed for everything now-even when not at care home,what ever mums annoyed about is my fault!

What it has made us do as a family is talk to each other and our adult kids about what we would want regarding care etc. We also got poa drawn up for ourselves,put trust funds to safe guard our property and kids inheritance in place already. We are in our mid 50s,but it made us feel better to get it all sorted
Ros

 

[nae sporran]

Like a couple of people have already said, I wish someone from the NHS or the Stroke Association had given us information on the Alz Soc or referred me to TP. I only discovered the Carer Support Centre when things took a turn for the worse 2 years after diagnosis.
I suppose I should have got involved in support meetings earlier too which may have prepared me for the emotional impact.

Saying all that, I think it was good that we didn't realise all the trips around Devon and the Brecons two summers ago were going to be the last chance to have some really good outings together as we were able to relax and enjoy it.

 

[nellbelles]

Tom was diagnosed with AD by his psychiatrist this information was put into his notes but not passed on to me.
It was only when a trainee Doctor let it slip after Tom had taken 3days worth of tablets in one day that I was able get medication and support for him.

I wish this idiot psychiatrist could have been sued and struck off!

 

[cragmaid]

To let go of the reins.

To be totally honest, I wish I had distanced myself more from the daily caring. I can say this now. It was my Mum who was ill not my spouse.

Because I would " just" do this or that, it became accepted that " Maureen will do it". and as a consequence I, and in part my marriage, becames strained. It got to the stage where I was putting Mum's illness before my health and now I am paying the price.

....... and this continued right up till Mum died in the Care Home.

 

[Lawson58]

I think I needed to know how to look after myself in order to survive another person's illness.

 

[Delphie]

I very much agree with the two posts above. I really wish I hadn't tried to do so much for my mum. I ran myself into the ground trying to support her 'independence' and it had a huge impact on my health, business and marriage. Even on how good a mum I was to my two boys.

Health is slowly recovering, marriage is fine, business will never be the same again, boys are now lovely men who turned out ok.

But the extra time she had at home wasn't worth the sacrifices I made, and I don't even say that from a poor me perspective. I, like many people, saw residential care as the absolute last resort, and I can now see that it doesn't have to be and that she would have benefited from it a lot sooner.

Living at home she was surrounded by filth, was dirty herself, ate bad food, was cold and lonely, her paranoia was off the scale and she fought me on every bit of help I tried to give her. In the care home she's clean, fed and warm. She has company when she wants it. And medication freed her from her paranoid delusions.

Had I continued struggling on to keep her at home we might well both be dead by now.

 

[LadyA]

Well, yes. Agree on that. I'm another who is suffering the health consequences of caring. My husband was so much bigger and heavier than me. I have damage to both shoulders and arthritis in various places, and back problems. Nothing serious, and doesn't stop me, but it's a reminder!

And I also wish I had known how very well, in fact, how much better, my husband would be when he eventually went to a nursing home. By then, I was completely at the end of my rope and had been for too long. He had become aggressive and violent, and was refusing to eat or drink anywhere near enough, and still, I was heartbroken at the thoughts of a nursing home, knowing he had had a lifelong dread of them. Well, the joke was on me! Once he settled in, he absolutely thrived in there, and loved it! He felt much safer, with uniformed male staff to care for him, and someone always around.