I’m 41 and my Mum’s just been diagnosed

[CJDiva]

Hi everyone
I’ve just created an account on here as looking for support
I had suspected for the last couple years that my Mum may have dementia but she refused tests and my sisters were dismissive. Last month she was hospitalised after a fall at home and she is still in hospital. We now have a confirmed diagnosis of dementia and she won’t be safe to go home. So it’s gone very quickly from living completely independently (with issues) to now looking for long term care. None of my friends my age have parents with dementia or going into care homes so I just feel a bit lost and looking for moral support! It’s also bringing out tensions within our family - older siblings have POA so are making all the decisions. Which is fine, but they aren’t communicating updates effectively (found out my Mum had another fall in hospital - but they told me 3 days after it happened) so any ideas about managing better communication be welcome too. Thanks

 

[Philbo]

Hi @CJDiva

Welcome to TP but sorry you are having to deal with these issues at such a young age.

My wife recently had to go into care in a nursing home, after I had looked after her at home for the last 6 years. She was only 62 when diagnosed (it had taken around 2 years to get to that stage) and our sons were nearly 41 and 38 at that time so I tried to shelter them from the harsh realities as much as I could.

It would be great if you could sit down with your siblings to discuss how you all feel, given that they can no longer be dismissive. I don't know if any best interest meetings have taken place with social services and your siblings and/or you but if they haven't, this can be a good time to get more clarity on care pathways for your mum, what type of residential care is needed etc.

In my case, myself and our sons were all in agreement as to my wife needing full time residential care but the case worker was very helpful in guiding us through the process and answering any questions and concerns we all had.

Regarding communications, perhaps you could set up a family "group" on WhatsApp or Messenger? We find this very useful to keep us all up to speed and ensure no one gets left out, which is easily done when circumstances are fraught.

I hope you can resolve any difficulties, so keep posting and let us know how you get on.

Best wishes
Phil

 

[Ponddweller]

Dear CJDIva - hello there. I hope you find the resources on here useful. I certainly lurked for ages before I posted anything and learnt so much. My husband and I are both 45 and both with fathers with Alzheimers (85 and 92) so I can sympathise. Most of my friends still rely on grandparents for babysitting whereas with us it's been the other way around for quite a while now! When my mum died a few years back, I had friends who were losing their grandparents at the same time.
Are you the youngest? I am, by quite some years, and for a long time I wasn't really regarded by the wider family as an adult and often got lumped in with the older grandchildren. Do you feel that they're shielding you from the grown up stuff? I've been really lucky with my sister (my eldest sister passed away last year) as there's only the two of us and we've really relied on each other through this. We've taken quite different roles though because of geography. So I'm doing the arms length admin stuff. Is there a role you could suggest for yourself so they see you as a useful ally? Or take on some practical research? It's horrible feeling out of the loop.
Best of luck and please post to say how you're getting on.

 

[Mousehill]

Hello! I'm 48 and the main carer for my 86-year old mum. We noticed mum declining for the last 9 or 10 years, but the last couple of years, she's gone downhill fast. We lost dad 2 years ago to a very late diagnosis of cancer, so from diagnosis to death, we had less than a fortnight.

I eventually had to pack in work as it was becoming impossible to juggle everything, but luckily I've recently found a bit of consultancy that fits around mum. It's been a huge learning curve and emotionally exhausting, dealing not just with mum, but with carers, friends and relatives (and immediate family!)

I've found this site the most helpful resource by far. Social Services were more hassle than help, but other counties may be better (I hope!) Mum's GP is great to a point, but mum refuses to get a proper diagnosis and the Power of Attorney rests with my brother, who can't see the point in pushing her.

The worst thing for me is being in a limbo of not really knowing what the outlook for mum is and
how to plan for the future. Neither OH or I are big earners, but we can get by and luckily, we live very near mum, but I feel I haven't really found that elusive balance between spending time with mum and looking after myself. Our house gets 'mucked out' occasionally rather than tidied regularly and although some days with mum, I get her baking, or take her out for a little ride, other days I am left walking on eggshells while she sleeps, or berates me for being useless because she's down with a UTI or just having a bad day. The worst thing is never knowing what I'm going to get when I open that front door. It could be my mum, or it could be an angry toddler, or a stroppy teenager, or a completely helpless and terrified lady who I do my best to reassure.

The best advice is don't take anything personally and don't feel obliged to justify the choices you make about care / career / life to anyone because everyone's situation is different and everyone's relationship with their parents is different.

I've just 1 sibling and we get along very well, but he's definitely not as tuned in to the dementia as I am and because he hasn't had to give up or even scale back his work, I do sometimes feel resentful, especially when he doesn't listen to my point of view and makes no real compromises. I know we disagree on the question of what to do if mum deteriorates more. My wish is for her to go into a nursing home locally, where we can visit every day but she has the round the clock care that drop-in carers can't provide and access to hoists and all the other equipment she's likely to need. He sees that as abandonment, a huge expense and a fast-track to death as he thinks she'd just give up. I think 2020 will be the year of the 'BIG' conversation about this!

Stay strong and remember, you're not alone here!

 

[imthedaughter]

Hi there @CJDiva

I'm 34 and my dad has yet to be diagnosed with dementia but is in a care home because of his memory issues. However my dad had me when he was in his 50s - he's 85 now so my situation has always been a little outside the usual range!

This has obviously all happened very quickly for your family - we've not been able to get a diagnosis yet. I am very glad to hear POA was already sorted. You're actually in quite a positive position in terms of your mum has been diagnosed and safe (or should be, but obviously things happen) in hospital while you regroup and work out what to do next and with POA, your older siblings can at least act.

That said, I know it's a massive shock and really sad to see your mum going from being so independent to needing constant care. I have cried a lot over the past 18 months just for sheer sadness of it all.

As the 'middle' child but the main point of contact (and the only girl, there's something in that) I've often felt a desire to protect the younger sibling - which has led to my younger brother being 'in the dark' at times but I've rectified that as a policy now.

And I have definitely felt overwhelmed when it's constant phone calls from hospital or drs or whomever which can leave you reeling a bit and not keen to go over it several times.

Perhaps set up a siblings WhatsApp group just to update about mum, and ask everyone to keep you all in the loop? (I would say we've done that but we just text, but there are only three of us!) It may become a bit of a doom and gloom channel but at least it's one place!

If you feel you can, offer to help with something specific, like researching care homes or whatever, to take some of the pressure off the siblings. Or if you're local, go to appointments and so on.

The thing I found really annoying as a person who is a bit younger is the amount of people who are my age who have heard 'this or that helps dementia' - there are lots of things which 'help' various symptoms but nothing that is a universal fix but suddenly everyone's an expert and if only I gave dad fish oil, got him to exercise and bought him a doll he'd be right as rain. I wish it were that simple!

Let us know how it goes - I've kept a bit of a thread/diary going and it's great to have a place to vent sometimes!