Finding it tough

[EPannell07]

Hello-
My mom has early onset Alzheimer's- she was diagnosed at 63, and I'm 32. I live alone and my friends don't understand the ups and downs of caring for someone with ALZ. I can't think about what she's going through, because I'm afraid if I start crying, I'll never stop. I am so afraid of losing her more and more every day, and it's so much easier to get mad and frustrated than to accept that she's slowly dying and is not going to be herself for much longer. I hate that I get upset with her, but I think it's because in my head it's either get frustrated or feel pity, and that breaks my heart. I try to be understanding and she accuses me of treating her "like a toddler" and that I'm "enjoying" watching her decline (which I'm not, obviously. She's all I have and it's killing me). If I respond to her like I would any other adult, she thinks I'm "trying to point out" if she forgets something. She basically gets fixated on my tone of voice and thinks that whatever I say is somehow tainted by a negative tone. It kills me to think that she thinks this about me. I don't know what to do. She says she needs me, and starts crying, then the next minute says she never wants to see me again, also crying. I'm seeing a therapist, but it's so much to process at once. It just hits me like a wall of bricks sometimes, out of the middle of nowhere. I don't know how to get out of the "funk" it puts me in, and I sometimes just start to cry. I don't know what I would do without her. I feel guilty I haven't gotten married yet, nor had kids because I know that by focusing on my career, I've denied her the right to have grandkids she remembers and to remember her daughter's wedding. It's breaking my heart, and I could use some advice for how to accept what is happening and to move past the difficult moments when they hit. I'd really appreciate any help. Thank you.

 

[Beate]

Crikey, love, you're not put on this earth to provide your mother with grandkids! You live your life the way you see fit and no guilt about it, please! You're doing a sterling job of looking after her at such a young age, so clap yourself on the shoulder instead of berating yourself, ok? Caring is never easy, and we all get mad and frustrated, it's only normal. It's good you're seeing a therapist, but maybe you also need to look into more support to lighten the load. You are entitled to a carers assessment by law, and Social Seevices can put carers in place, a day centre, respite weeks or just someone to sit with her for a chat for a couple of hours.

With regards of communicating effectively with your mother, here's a great article that I can't recommend enough:
https://forum.alzheimers.org.uk/sho...ionate-Communication-with-the-Memory-Impaired

 

[Careforme]

I am so sorry you are going through this. I can completely relate to your feelings and thoughts. It's heartbreaking.

My mum and I were of same ages to you both near enough and it lasted for eight years.

To feel all your fears and thoughts at this age is understandable and the closeness of your relationship and how much you care can make these feelings so much more intense. I believe that is why I struggled with my own mental and physical health throughout this whole time. Not even taking into account what and how I poor mum felt and went through.

All the things I thought I would have done with my parents, from getting married and having children has never happened. It would have been virtually impossible for that to happen given the situation and my wellbeing.

I am now 36 and mum passed four weeks ago and even now I think if I do have children how I could never when she was alive for her to be part. You need to give yourself a break and not to be hard on yourself but it's easier said than done.

I never planned my life out or said by this age I will have done this and that. That everything would happen naturally and when it should but I never thought life or things would play out like this.

I feel others think I have missed out on so much but I guess it's life and how we are as people and the care and time we want to do for our loved ones. You can't change how you are but you can change your outlook on time but it's hard going.

Your anxious levels and feelings are completely understandable but only feels understandable to others you can relate to in these awful times and experiences. That's how I feel about it.

Friends and family can ask how you are and it's not their fault they can't fully understand how you feel deep down and at times I wish they could. Although never wishing anyone to go through these experiences.

Please stay strong, for yourself and your mum but please seek as much support and help from others to get you through this and lighten the load as others have said.

I never thought a couple years back when community nurse said to do this as it will get harder but it does and you need to accept the help. Of course it doesn't feel right and you wish to keep continuing your caring role and that is through your pride and wanting to do it for your mum.

Please keep posting and expressing your feelings. It may not change anything but the support and advice and not to mention being able to express your feelings on here can really help.

Take care xx


Sent from my iPhone using Talking Point

 

[Bunty123]

Advice please !

I look after my husband who was diagnosed with early onset three years ago aged 61. I do not really have any help from nhs / memory service and as we were self employed working on our business together I now do his job as well as my own.

How do I deal with his utter anger that is totally focuses on me? Told the memory clinic that I was baling out two months ago cos I couldn't cope and played one of his angry sessions that I'd recorded on my phone. And guess what, I've heard nothing......
Is there any medication that might help? The next question sounds cruel and shouldn't be lumped with the rest but.....
What is his life expectancy ?
Sorry to sound so down and callous

 

[Shedrech]

hello Bunty123
and welcome to TP
there's nothing you can't ask here; what you've written doesn't sound callous at all
what is does sound is that you are pretty much at the end of your tether and not getting the support you need

do keep badgering your consultant and GP as there may well be meds that will help your husband's moods - quite a few people with a diagnosis take an anti-depressant for instance
have a chat with your GP about YOU too, as you and your welfare are as important as your husband and his needs - don't hold back; GP's sometimes don't seem to quite get the message that the carer needs to heard, as they tend to focus on the on with the diagnosis
have somewhere you can retreat to when he's angry - best to walk away (maybe say you need the loo, for an excuse) then calm yourself, and let him settle before going back to him as though nothing has happened and with a distraction eg a cuppa and favourite biscuit (hard to talk with biscuit in your mouth), and with a smile (gosh we get to be good actresses) - I found with my dad that engaging with him when he was angry/agitated just fuelled his mood; there was no point to explaining/reasoning/arguing as he wasn't able to be reasonable and only saw his own point of view (empathy/sympathy disappears too, so behaviour appears wholly selfish and self-centred)

have you contacted your Local Authority Adult Services for an assessment of your husband's care needs - he has a right to this (if they mention finances, be vague; there will be a financial assessment after the needs assessment to sort out whether the LA will fund any of the care) - it may be that some time at a day care centre will occupy your husband, so breaking the focus on you for a while, and you'll get some time to yourself
I wonder if there's anything here that may help - a link to the AS listings of local services
https://www.alzheimers.org.uk/info/20011/find_support_near_you?_ga=2.197292716.2093253633.1496393612-213745934.1462100281#!/search

do look into benefits that your husband may be entitled to - CAB and AgeUK will help you with this - and/or have a chat with someone on the AS helpline

0300 222 1122 or by email at helpline@alzheimers.org.uk.
•Helpline opening hours:
•Monday to Wednesday 9am – 8pm
•Thursday and Friday 9am – 5pm
•Saturday and Sunday 10am – 4pm

as to life expectancy - that's a tricky question, as you'll appreciate - maybe a couple of the AS factsheets will give you some info
https://www.alzheimers.org.uk/youngonsetdementia?_ga=1.122642891.1920967186.1485514504
https://www.alzheimers.org.uk/download/downloads/id/1772/factsheet_the_progression_of_alzheimers_disease_and_other_dementias.pdf

I'm sorry you are so down - keep posting here - members are knowledgeable and sympathetic
best wishes