What’s the best thing you did?

[SarahA123]

Dad was diagnosed with cognitive impairment a few years ago and since his last assessment he has rapidly declined, even more so in the last few weeks. The professionals agree he has changed and is highly likely to now have a form of dementia but waiting on an appointment at the memory clinic in 2 weeks to get a diagnosis. He is very confused, shakes a lot,says things like he’s been for a walk and hasn’t, struggles to move his legs and now arms like the brain isn’t sending them signals, has become incontinent, always very tired and gets very confused when watching telly, like he is living in the TV programme.
And he doesn’t stop eating with a real craving for sweet things.
Mum is doing amazing caring for him but at 80 it’s too much and we are now going down the route of carers to help him shower etc a few times a week.
My question to you all is what one thing have you done that has made a positive difference that you wish you’d known earlier. Just looking to get some hints and tips to make this journey a little bit smoother. Thanks

 

[Grannie G]

Welcome @SarahA123

I wish I hadn’t hung on for too long before accepting help

I continued to respect my husband’s resistance to having strangers in the house until I realised although he didn’t want help for himself he would accept help for me. In this guise I got a ‘cleaner’ who was actually a dementia trained agency carer.

The quality of both our lives improved tenfold

 

[sdmhred]

To not worry about what might happen and take each day as it comes ……many of the problems I imagined haven’t happened…and others have come instead…..to focus on each day …(whilst making appropriate plans eg POA, carers etc)….

 

[northumbrian_k]

Hi @SarahA123 and welcome to posting on Dementia Support Forum. Personal circumstances and how dementia develops in individuals differs so much. What I say may not be appropriate in your circumstances at this time but hopefully will give you some things to consider.

While I have a few candidates for 'best thing' I know before writing them down which one I will choose. Here are the next to best: retiring early to look after my wife; adopting a greyhound; arranging Power of Attorney; joining the Forum and asking for help; taking notice of what Forum members said; employing a carer/befriender so that I could have time off once a week; arranging a few short respite stays; taking stock and realising that my wife's care needs were beyond what I could provide; finding a care home to suit her.

These all took place over a number of years during which my wife's Alzheimer's Disease worsened and our life became ever more limited. They were also essential steps on the way to doing the single hardest and best thing, which was to take the decision to hand over responsibility for my wife's care to the wonderful staff at her care home. That was in May 2019 and has proved to be in my wife's best interests and my own.

 

[GillP]

A hard one but I think trying to find something positive for us to do together every day was vital. It gave us both routine and pleasure and kept our connection going. Sometimes it would be as simple as listening to music or playing dominoes other times a drive to a cafe for tea and cake. Diagnosis came as we went into lockdown so the isolation was huge but we had each other and that was important for us both. Another thing was to tell him on a daily basis that I loved him. On a practical level accepting help and joining a group for PWD and their Carers.

I think that ‘the best thing’ changed as the dementia progressed but overall it was living with the knowledge that the love was still there even when he couldn’t articulate that. And breathe ...

 

[Canna]

Accept every bit of help that comes your way, even if you don't feel you need it at that moment in time. I fought hard to get help and support for Mum, but I wish I had accepted help for myself at an earlier stage, and hadn't tried to put on a front of coping. Mum was adamant that everything was fine, and I felt as if I was betraying her by saying it wasn't (and quite a big part of me wanted to believe that she was right, and everything really was OK). But caring for a person with dementia takes a team of people - you can't do it alone.

Keep notes or a diary -health issues/ behaviour, problems (so many problems sound quite trivial on their own, but put them together and they build up a picture of how the person with dementia is really coping); and conversations with GPs/nurses/Social Services/carers/care homes etc.

Don't feel that going into a care home is a sign of failure. Much as my pre-dementia Mum would have hated the idea, she settled in quickly, felt safe, secure and had friends and lots of super carers. It was like gaining an extended family for all of us, rather than losing her.

 

[Anne19]

Hi @SarahA123 - sorry to hear about your dad - it is not an easy journey. I think, like others have said accept all help offered and look for help too - support groups etc for you and your mum and maybe day care for your dad. This Forum has been great for advise and also just to feel like you are not alone.
Make sure you have Lasting Power of Attorney in place for Finances and Health - this makes things so much easier to deal with in the future as you can then legally make decisions for your dad.
See if he is entitled to Attendance Allowance - this extra money can help if he is entitled to it.
Don’t presume that you will be able continue to care for your dad as he deteriorates - it will eventually take over your whole life. My mum moved into a Care Home in July last year as she was wondering outside in the middle of the night. Other than giving up our lives to move in and look after her (which she would have been mortified about pre dementia) a residential care home was the only option. We started looking for the Care Home many months in advance, even though she was not at that stage then. It’s a good idea to see what is there and what you feel would work for your dad and your family.
On a practical we got a simple remote control, with only 4 buttons, as mum had forgotten how to use her normal one.
We also got day/night clocks as she was getting very confused with day and night, but she never really got the hang of the clocks.
Everyones journey with dementia will be different so you may not need any of these for your dad. You are certainly doing the right thing by trying to learn more and be prepared.
The three most important things I think I did learn were with a person with dementia - Don’t argue, don’t contradict and don’t ask questions. I found this quite difficult to begin with but it has certainly helped with my mum and how I interact with her.
Wishing you lots of luck - keep strong.

 

[GillP]

There’s some good advice here, many things I did but I’m beginning to forgot some of them. A diary and self preservation are essential. I had to learn to fight the system, develop a thick skin and keep asking for advice.