I wish I was more patient!

Heaven1977

New member
Jan 4, 2020
7
0
My father has late stage dementia and has the full works of symptoms. He lost his appetite but now after medication it has returned and he's constantly asking for food. Must be his memory. He is very restless all day and night. Agitated and repeats himself again and again. He's pacing up and down and that's driving me and my mum mad. He won't do any activities anymore. I've tried and he just looks the other way. He's shouting and waking us up asking for food and cigs constantly. He's incontinent which is hard!

Finally we are getting help but that will take time. However, what I really wanted to get off my chest is THE GUILT. I can't explain how bad I feel. I'm constantly shouting at my dad and so is my mum. I go to bed crying saying I will be more patient tomorrow but it happens again the next day. I'm patient for an hour or so but after constant questioning and behavioural issues I start to shout. Out of frustration I sometimes shake him and ask pathetic questions like 'what is wrong with You?', 'why are you doing this?' Etc etc. I'm deeply ashamed but I do it and then cry in the bathroom by myself.

Why can't I stop? I feel like my personality has changed and all relationships are effected. I look at my mum and feel sad for her and try to make it easy. Usually in the morning I'm shouting and then calmer in the evening and my mum is calmer in the morning and finds it difficult in the evening. Our day is just about dad and frankly we are exhausted. This has gone on for 4 years. Finally I give up and am asking for help.

I need some tips as to how to make it easy for my dad and tips on how to be a better daughter to him.

Me and my mum both are suffering from medical conditions and illnesses and are trying to be healthy mentally and physically so that we can look after dad but I fear We're gonna crash and burn.

I think it's the guilt that I'm not a good carer that is killing me.
 

Yardman

Registered User
Dec 14, 2019
22
0
I have been a 24/7 sole carer to my wife of 50 years. Diagnosed earlier last year with Fronto Temperal Lobe. I never knew how much patience I had and anger control. Continual care is a difficult journey, and to ease the pain I joined a support group. Meeting once a month and attending a 10 one day aweek course. The value from speakers and those attending are tips, ideas and the knowledge that many are Carers with complex problems over and above Dementia itself.
I too had Guilt enhanced by having to place my wife in a Care Home a week ago, after she had been hospital over Christmas. Knowing she is in a safe environment and getting the best support. The Guilt is decreasing. However the worry still lingers that small things that I did for her at home may not be thought of by staff. As many of those who contribute to Talking Point say. You reach a point where you must get help. My GP has a Carer's leader who has advised me. A notice board for Carers gives information. A luncheon get together, Carers walks and other social activities. I have learnt quickly that there is support, advice and guidance out there especially within the Voluntary Sector. Good luck. Yardman.
 

Heaven1977

New member
Jan 4, 2020
7
0
Thank you. I can't wait for the support. It will help us a great deal. We just want to make it easier for my father. I want to be the best support I can be for my parents. It's time to join the group's and get help.
 

nae sporran

Registered User
Oct 29, 2014
9,213
0
Bristol
Welcome to the forum @Heaven1977. Sorry your dad is ill and you and your mum are at breaking point. It is so hard to handle, and you will find support here.
Have you read the compassionate communication advice thread. I know it seems hard to follow when you are tired and stressed, but something on there might help to defuse the situation. https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
If Social Serivces are slow to respond then you can call the Alzheimer's society helpline for advice on your other options, or call social services again to let them know just how urgent the help is needed and how vulnerable you all are.
https://www.alzheimers.org.uk/get-support/national-dementia-helpline gives you the times and phone number. They are open today from 10 to 4.
I hope any of that helps and you can get support soon.
 

Palerider

Registered User
Aug 9, 2015
4,168
0
56
North West
@Heaven1977 try not to be so hard on yourself. I don't think anyone who cares is a saint to be honest, we all find parts of caring challenging. Some can cope with difficult/challenging communication and others are better at dealing with practical care -washing and dressing etc, while others are good at coping with challenging behaviour. Few people have all of these skills and abilities, and after 30 years in healthcare I don't think I have seen anyone not get frustrated at a situation or themselves.

The important thing is you have recognised where you need help. Groups sound like a great idea, sounds like @Yardman found a great source of help. If its available to you take it, there is nothing here where we live, but had there been I would have joined. There are some good youtube sessions on dementia as well, might be woth having a look -Teepa Snow is very good.

I found our local SS good once they actually got mum on the radar, but slow to get her there, you do have to be assertive sometimes.