My dad has early onset and I can’t cope

[bluemoon00]

Hi.
I have been trying to find a support group or something where I can talk to people about the harsh realities of caring for someone with dementia.
This seemed like a good a place as any, so here goes…

I am 21 years old, and almost a year ago my dad was diagnosed with early onset alzheimer’s. He’s barely even in his fifties. We all knew he’d been struggling for a long time, he was very anxious and angry and couldn’t cope at work anymore. Then COVID hit and we all had to go into lockdown, which I think sped up the entire process. All of my dad’s usual routine went out the window, all of the hobbies he used to indulge in just ceased to exist, he has simply become a hollow shell of who he used to be.
It’s breaking me, it is literally torture to see the life fading from behind his eyes, I always dreamt of him walking me down the aisle, holding my children and playing with them, pottering about in the garden well into his 80s. But now, it’s all slipping away, so quickly, and there is nothing anyone can do to stop it. I just don’t understand how anyone can live through this, knowing it doesn’t get any better. My grandmother also had Dementia and she passed away 5 years ago today. By the end she was practically comatose on a vibrating bed, unable to move, talk, or even recognise those around her.
I can’t get that image out of my head that that will be my dad before we know it, and I am only 21. It feels so cruel and so unfair and I am so desperately sad that the best of him is long gone and i’ll never get it back.
I can’t help but think of the things that i didn’t know were my lasts with him, like the last time he drove me somewhere, or the last time we played a board game together.
In a lot of ways we are blessed that my dad is a funny and sweet man, recently he has let go of a lot of his stress and his anxiety so he is no where near as angry as he used to be (as long as he has had his medication) and at least I have managed to get some good memories over the last couple of years, I am just so conscious that it is a literal ticking time bomb.

Basically, I am broken, I don’t know how i’ll ever recover, my dad is one of my absolute favourite people in the world, he has worked his entire life to provide for us and now his “retirement” will be spent wasting away slowly until the end, which may be 5 years or 20, and I don’t know which is worse.

Sorry for such a long rant, the hardest part is feeling so alone and isolated, no one knows what i’m going through and plenty of people say “well my Granny had dementia it was terrible so I know what you’re going through” You don’t. you think that you are being helpful but you’re not. This is my dad. The one who has cared for me my whole life, and I am 21 years old and i’m already having to think about care homes.

The saddest part is that he doesn’t even remember. I’ve seen posts here of people who have dementia and they are so aware and are able to do things about it, my dad was in denial for years, and now I have to listen to my mum remind him constantly what is wrong with him.

Thank you for reading this far, I just felt i needed to let out everything I was feeling, and hopefully if there are any other young carers in a similar situation then it could be good to start a thread sharing experiences so we can reassure eachother we’re not alone.

 

[Izzy]

Welcome to the forum @bluemoon00

I'm so sorry to read about your dad. I hope it has help a bit to share here. I'm glad you've found the forum as you'll always find understanding and support here. I wondered if your mum would also find the forum useful.

There's an area of the forum for younger people with dementia and their carers. You might find other useful threads there.

Younger people with dementia and their carers

This forum is for people with dementia under the age of 65 and their carers, families and friends.

forum.alzheimers.org.uk

This site might also be of help -

Young Carers | Mental Health Tips for Young Carers

Being a young carer can be rewarding but we know it can also feel tough. Find out what support you can get and the places you can go to to get help.

www.youngminds.org.uk

Keep posting.

 

[canary]

Im so sorry @bluemoon00
You are indeed so young. Yes, there are people on here with dementia who are aware and able to explain to others and to make plans to mitigate their problems, but I must say that they are in the minority. Most people with dementia are unaware of their problems. What you are feeling is anticipatory grief, although I dont know if knowing that there is a name for it will help much.

 

[Imogenlily]

First off, welcome to the forum. I promise you're in the right place.

Secondly, I want to say I'm so sorry for what you're going through, my heart really goes out to you, and your dad. Dementia is a cruel disease at any age, but early onset is just worse.

My mum was officially diagnosed with Alzheimers in May but has had it a long time (a lot of denial) and I became her live-in carer. Like your dad, she's had a very rapid decline in lockdown as she was shielding. Your dad's case sounds very similar to my mum - all her hobbies, interests, everything disappeared. She stopped socializing, she got constantly angry with me (I became her live-in carer), got angry with others. She went from an out-going, intelligent, highly sociable superwoman to a painfully thin, almost complete shell. It's hard to see her like that and something few who don't experience dementia can understand.

It IS a form of torture for us, it robs us of our future, our dreams with our parents and is so incredibly unfair. Good health does not seem a big wish or ask when it comes to our loved ones.

I'm so sorry about your grandmother and having to see that all before too. I feel very similar - my mum was sectioned last month and I had no clue a lot of things were going to be 'lasts'. Everyone's dementia is completely different, just because your grandmother or someone else's grandparent had something doesn't mean your dad will, and there's a different dimension with early on-set. What you're dealing with, especially at your age, is extremely unfair and evil. It really is. Please don't let anyone diminish or minimize how you feel - at any given moment or second - about the situation or your dad. It's intensely personal.

I don't know if it helps, but I promise you, everyone on this forum is amazing, and they will be here for you. There is a huge wealth of knowledge, advice, wisdom and compassion. Believe me, it's a lifeline that has saved my sanity a few times. Don't ever feel bad about posting here as often as you need to. Even if it's just to scream.

I'm also going to offer you some advice of just stuff I've learnt that could help:
(please feel free to tell me to sod off - I won't be offended )

• There's a sub-section here that's for early onset dementia and their carers. This may be helpful.
• Dementia UK is a very useful website. It includes support for early on-set dementia and carers. There is also Dementia Carers Count, Carers.org, Young Carers Action Day (https://www.dementiauk.org/students-affected-dementia/) and an article about a student carer that may be helpful: (https://www.alzheimers.org.uk/get-s...sheets/dementia-together-magazine/young-carer)
• Google and consider joining dementia support groups specifically for carers - check for any that specialize in young carers/early on-set. A lot offer support groups just for carers, there are also day groups for dementia patients, memory cafes, dementia choirs - music has been proven to be very helpful with people (and carers) with dementia.
• Talk to your GP. If you don't like your current GP ask your surgery to see a different one, or consider another surgery if you can. Talk to your GP about how you are struggling mentally, emotionally and physically. Don't be afraid to make a nuisance of yourself. Also tell them you are your dad's carer and ask that to be put on yours and your dad's medical record - this will mean they will then discuss things with you about your dad that otherwise they wouldn't. If you think it would help, consider medication such as anti-depressants - but only if you feel OK about this. Your can try more natural remedies such as St John's Wart or avoid altogether if medication isn't for you.
• An alternative to medication is essential oils - they can help with a lot - depression, insomnia, anxiety, pain, stress - the list is endless. Some of the best ones include lavender, rosemary, clary sage. I use them in diffusers, candles and rollar balls almost religiously. You can also put them in baths, shampoo, body wash etc.
• Strongly consider going to counseling. This has been an absolute lifesaver for me. Being a carer is a 24/7 commitment that drains you like nothing else - mentally, emotionally, and physically, it messes with your heart and your head. GPs over free, time-limited counseling but there are waiting lists. Try to google - there are directories of counselors. They will often give a free initial session - see if you gel with them - if you don't, don't go back. But please try someone else. Don't give up. You have to feel safe with the person but please try another. Some will give discounts or you might be able to find free counseling at some places. It might be worth seeing if counselling would help your mum and even your dad too
• Don't be afraid to ask for help - this is what I found the hardest. There are helplines: Admiral Nurses and Alzheimer's Society are both really helpful - you can ring or email them about anything including those struggling to cope. I've sent really long, rambling mails full of panic and they've been very kind, lots of advice and quick to reply. It's OK not to cope - it's normal. You can also ring the Samaritans helpline 24/7 at any time day or night and they will answer.
• Look for young carer groups near you. Most people your age will have no clue what it's like to go through what you are. It can really help to talk to people who understand because it can feel so isolating as if you're the only person who's experiencing this - I promise everything you are thinking/feeling is 100% normal and OK.
• If you haven't get you and your mum to contact your local county council. Ask for a care needs assessment for your dad, and also for a carer assessment for both you and your mum. They can offer help with various equipment, carers, respite care etc. They will assess your home and give advice to make it dementia friendly. Off the top of my head these can be really simple - for example removing all rugs from the floor (tripping hazards), using different colour plates (red helps appetite for some reason), getting a dementia clock (they state day, date and time) from Amazon. Getting stair rail/banisters to stop falls. Chairs and beds that can move up and down, walking sticks and frames, special grip cutlery and pens, daily pill box (diff colour for each day). There is a lot of stuff out there.
• If you haven't got one, consider buying an Alexa Echo - you can set reminders - when to have medication, remind you to do tasks (or to relax!). Also I found it helpful to buy indoor cameras as falling was (is) an issue for mum. I put them in plain sight in each room, but high enough so they couldn't be fiddled with.
• Also if not done, get Lasting Power of Attourney for medical and legal matters (they are separate documents) for your dad - both you and your mum could be your dad's attorneys - you need a solicitor to sign it - they can also complete the forms for a fee. You can fill out the forms on the government website. It allows you to make decisions on behalf of someone if they need it in the future. However it is a *long* wait to get this - ours took about 26 weeks. You can find it here: https://www.gov.uk/power-of-attorney
• If you haven't, apply for Attence Allowence for your dad - this is help for his care needs. There are other benefits you can claim too e.g. mobility but in order to get them you need attendance allowance first. Again this can take a long time to process: https://www.gov.uk/attendance-allowance
• Don't promise your dad he'll never go into care no matter what. I made this promise to my mum and eventually it was taken out of my hands - she was sectioned and now needs a nursing home. I still feel horribly guilty about breaking my promise. But caring, especially with dementia is something that just gets worse - at some point they will need full time nursing by professionals. Do not feel guilty if this happens. You are human. You need rest, sleep, meals - all the things trained cares can do because they work shifts. Carers don't get that and they burn out.
• If you dad can still do this get him to state his wishes in regard to future care plans - have this both written and recorded if possible. Also I hesitate to suggest this but if it's not been done, I'd advise him to draw up a will and arrange and pay for his funeral in advance (I'm sorry to say that, but it's something people put off and it's an added stress on top of bereavement)
• Has your dad been assessed by the memory clinic yet? If not push this with the GP. They will give your dad medications that can slow the progression. Also if he starts having aggressive behavior there are other medications - just a note, the memory clinic main interest is medicine not the other issues surrounding dementia
• Take time to self care - make sure you get enough sleep, eat, exercise and have rests. Go visit friends, go outside, have a massage. Don't forget about the outside world. Carers often forget about themselves and often end up burnt out - this can lead to health problems, so please take care of yourself.
• Do anything you can to relax yourself - massage, exercise, reiki, ASMR videos (type into YouTube - I love nature sounds and beauty/massage videos). Hot baths/showers, manicures, eating regularly (I'm terrible about this), sleep - seriously sometimes the best thing is to take a nap (and consider getting an electric blanket). Stress can come out in very physical ways: insomnia, muscle/joint pains, stomach pains, CFS (which I have), allergies, ulcers, skin conditions, panic attacks, hell even heart attacks and strokes. If you're in pain take pain killers, go see a chiropractor, a GP etc. There's a carer golden rule: put your own oxygen mask on first before helping others. It's a hard one but it's completely right. If you burn out you can't help your dad or yourself. Trust me, he does not want you burnt out - neither do you. I got CFS from burnout - it still affects my health today.
• Remember everyone's dementia is different. Do NOT compare other people's experiences to you. Dementia can vary greatly in people with what symptoms they get. Some get delusions and aggressive, some are very passive. Everyone is different. Declines vary too, some are OK for years, others have rapid declines. One person's experience or knowledge doesn't dictate yours.
• Buy things like memory photo albums where you can record your dad talking - or use your phone. Record everything - I wish I did that more before mum declined. Talk to your dad as much as possible. Share photos and stories.
• Tell people. Tell any tutors, employers, colleagues etc what you are going through. Talk to friends or family members if they'll listen. Sometimes people can surprise you with compassion - or similar experiences. Most people will know someone or of someone who's got dementia - it's just not talked about
• Set boundaries - super important and very hard. Make some hard no-go lines for whatever you need. This can be things you can't deal with care-wise, no-go topics of conversation or dealing with certain people etc. You matter - and so do your boundaries.
• Care costs are tricky. A lot depends on your parents financial situation and their savings. Some care can be fully or partially funded in certain situations. It's worth asking your local council about this - or getting your mum to.
• Don't let anyone dictate what to say or how to deal. Everything you feel is valid. If you are close to your mum, don't be afraid to talk to her, same with siblings (if any and you feel willing to) and other relatives - but only if close to you or that you feel comfortable - don't tell anyone anything you don't want to.
• Journaling or just writing down your feelings can be helpful. Or paint them, sculpt, sing or scream. Don't be afraid to punch a cushion or two if you need to, if you're a sporty person try your local gym (esp punching bags) or running
• Try meditation, mindfulness, breathing, yoga or pilates to calm your mind. There's plenty of free youtube videos that can help. There's also some good videos on youtube about dementia and being carers too.
• Laugh. Seriously. Watch something funny or brainless - or both. As many times as you need to. Stupid songs (I go for I'm Too Sexy and Wasn't Me), movies, TV, crappy jokes, animal videos - whatever helps. Sometimes even fake laughing can help. Half the time it's a choice between laughing and screaming. Screaming can be good - but sometimes laughing is better.
• Be kind to yourself. Be patient. Treat yourself the way you'd want your dad or a friend to be treated. What would you expect from *them* if they were in your shoes? Your dad loves you, that will never go, and he'd want you to be as happy, healthy and kind to yourself as possible. Be gentle with yourself and don't expect so much of yourself.
• Build in treats for yourself - a coffee out, a holiday, a yoga video, a favorite meal. Keep things simple. Order in food, get ready meals or meal delivery services (Cook, Parsley are too good ones) or home meal kits. If you can afford it get a cleaner perhaps once a week, or get your laundry done and returned to you - little things can make a difference when you're in the midst of caring. Also there are some programmes right now about dementia - especially the dementia choir. It's uplifting despite everything.

Sorry this became so long. I hope it didn't overwhelm you. I just really feel for you, I hate your in this situation.

Please keep posting on here, let us know how you're doing. Please know you're not alone.

 

[Jerseygirl]

Hi, there are some lovely supportive people on this site and it helps to get it out how you are feeling. I understand anticipatory grief so much - I look after my mother with dementia, feeling her slipping. Just wanted to send you a big virtual hug - I'm 50 and find it so very hard.... I can't imagine how much harder it must be at such a young age. I just wanted to send you my very best.

 

[sdmhred]

I’m so sorry Bluemoon00 that you have to experience this awful disease at such young an age. Life is not fair and v cruel at times. I’m fairly new here but it’s great to have a group of people walking the same steps and have experiences to share. The list by @Imogenlily is amazing. I have taken a screenshot to take in slowly over time. Take one day at a time.

 

[sdmhred]

There was a post the other day by another young carer if you look around for it.

 

[Dandy64]

Hi @bluemoon00
your post is so desperately sad , I’m so sorry that you are going through such a difficult time.
Im 58 and my dad is 87 and just been diagnosed with early onset Lewy Bodies. It’s strange because even tho I’m 58 the father daughter relationship still feels the same as ever, I feel like I did when I was 10 when I’m with him and hope I can hang on to that a bit longer.
I realise you are trying to come to terms with the situation and really hope you can find a group chat for people Your age going though the same thing.
Thinking of your Dad and you it must give him pleasure and a feeling of stability to spend quality time with you so please try and connect with him as much as possible for both of your sakes .
Its going to be hard but there will be special moments as well, I’m sure.
Take care and remember to look after yourself/listen to music/chill with friends and just be 21! ?