88 yr old mum recently diagnosed with dementia.

[Rosemarie 60]

My mum only got diagnosed last month.
I’m ok when I’m with her but when I leave I cry.
Is this normal to feel so upset seeing your mum confused and muddled?
im obviously not dealing with this dementia and I’m the only child and I’m 60.

 

[silkiest]

Hi and welcome @Rosemarie 60 ,
of course its normal. Its upsetting to see your mum like this and to get the diagnosis. Its almost like going through a bereavement whilst they are still here but not the person you know. There will be lots of changes in the future but most of what you experience will have happened to someone else before. There is a wealth of experience and knowledge here - use the search box at the top of the page to find threads or posts on things you want to know about.
If your mum doesn't have it set up yet, and if she is still able to make decisions it will be a good idea to set up power of attorney for both health and finance - it can be done cheaply through .gov.co.uk if you have reasonable computer skills and it will save you a lot of hassle in the future.

 

[Rosemarie 60]

Hi thank you. My husband and I are in process of pOA .
I write her notes to remind her when I’m coming again and what I’m bringing with me.
I ask her to write notes down but she forgets to do that.
This is all new to me.

 

[Sarasa]

Hi @Rosemarie 60 and welcome to Demetria Taking Point. As @silkiest says this is a friendly supportive place and you'll get lots of help and advice here.
Glad you've got the LPAs started. You'll find that really useful in the future when you have to start making decisions for your mum.
Does your mother have any help coming in at present? If not now might be the time to introduce someone more as a companion than a carer. It will then make it easier when she need more care later on. If she will be self-funding you can go ahead and arrange this. If not phone social services and ask for a needs assessment. Due to covid they have long waiting lists so best to get in contact before you feel you absolutely have to.
Some technology such as a dementia friendly clock might help. If your mum has broadband something like an Alexa show might help you and her keep track of when you're coming and what you need to do when your there. I must say nothing like that worked with my mum, but she had the added complication of being partially sighted and very determined that she was fine and didn't need any help.
As for the being upset, it is totally normal. The only way I could cope was by splitting myself in two and being very hard-headed and hearted about the things that needed to be done

 

[silkiest]

Hi @Rosemarie 60, we have used a page a day diary with my mum in law for a few years. We wrote who was visiting and when, hair appointments, Dr appointments , outings planned and any new health information down for her. It has worked very well for a couple of years and helped her to feel in charge of things but unfortunately now even with a marker in the right page she is confused re the day and date. At one stage we even got some large plastic sheets on a roll that stuck to the walls with static electricity - we could write notes in dry wipe pens that she would see on her way out of the house to remind her of things eg, ' ring son if you need any shopping' and later on 'don't forget your key' until she started to ignore them. This might be good for you to remind her what you are bringing. Unfortunately getting your mum to write down things she needs to tell you is unlikely to work - even if she intends to she is likely to get distracted and forget.

 

[Whisperer]

Dear @Rosemarie 60

Welcome to this forum. Take your time to adjust. Your mum’s diagnosis will most likely mean more to you in terms of emotional impact than her. That is normal but does not get explained to Carer’s. Couple of points to note on emotions.

1) You can use this forum for support and advice but do so mindfully. Each person with Dementia will have different experiences over different time periods. Your mum will unlikely face all the problems mentioned on this site.
2) Do not destroy today by worrying about what may happen and when in the future. You can plan to a degree but try and avoid developing set road maps as Dementia is unpredictable. Mental flexibility is your best tool for the future.
3) Please remember as a carer you are part of the solution and not the problem. You are a human being, you may stumble at times, make mistakes, etc, but you will always do more good than not.
4) I am several years into caring for my mum. Things happen sometimes which still catch me out emotionally. Tuesday and out of the blue mum asked what happened to her husband, is he dead she asked sheepishly. I explained and mum said so I am a widow? Until that point mum‘s long term memory meant she always remembered his death many years ago. Now that memory is slipping away as well as what she did two minutes ago. Caring is stressful, emotionally demanding, will provide knocks to the Carer. Be gentle with yourself. Please goggle the concept of “anticipatory grief”. Also look up the thread on here named “compassionate communication”.

Finally please use this forum. No one wants to be a member, we would rather our loved ones were well. That said members are friendly, generously share their experiences to help others and offer support to others. Please do not be a stranger either posting or just reading the threads. Best wishes for the future.

 

[lemonbalm]

Hello @Rosemarie 60 . I see that you have already had lots of good advice. There are many of us who are going through, or have already been through, the same experience, so don't feel lonely. There will be plenty of support for you here and good solid advice on just about anything that will come up. You'll need a little time to adjust so be kind to yourself.

 

[Rosemarie 60]

Thank you and I will read posts .
yes I will start introducing some one to her.
we are self funding so I will get on to that now.