[Closed] Dementia - family support

Really tough one ... I was the one 300 miles away and my Dad the one with alzheimers...

He also got very paranoid (though a lot of that was probably medication ...) and my brother got the brunt of it with my Dad accusing him of all sorts of things...

I used to travel up when I could but I have a young kid of my own.... and quite often I'd do a 6 hour drive and he wouldn't come round the entire time I was there... when he did it was worth it but many times it was a wasted drive on the off chance I'd be there when he became more aware.

But I was left feeling frustrated as it was my uncle who pushed this, not my dad or brother.

I think maybe just take it where it comes... I know you are frustrated but you don't want to damage what relationship you do have with your Dad and Brother... I've lost count of the number of family breakdowns when elderly relatives get bad.... My mum fell out with her oldest best friend (her nephew who was the same age) when his mother was ill and with another cousin (who lives in Geneva with his family) when her other sister was ill... and non of them helped the situation but have had lasting damage to her relationships!

A horrid situation and very difficult.

The disease:
Depression and dementia often go along together and indeed one is often mistaken for the other.  Diagnosis is difficult.  anti depressant medication can help as can some of the newer meds for dementia.  One thing you could do perhaps is next time you are over arrange for a GP visit and you go along with your mum to the docs to help her describe her symptoms and to help ensure she is getting the correct medication.  People often minimise their struggles especially older folk - partly for their own self esteem and partly out of fear.
Dementia is progressive and will only get worse unfortunately.  Get a power of attorney in place now if your mum is still able to sign one which it sounds like she is.  Its so much easier to organise future care if yo have one in place and its much harder to sort out once she reaches the stage of needing one.

Supporting your mother / father:

You are doing what you can and you need to be content with that.  Everyone reaches the limits of what they can do to help for practical and emotional reasons.  these limits are different for different people.  Once you have reached your limit then there is no more you can do.  Frustrating tho that is you need to learn to be content with that.

Your dad:

He is slowly losing his wife.  If its bad for you then consider how it is for him.  Its almost like grieving for a death but unlike a death there is no endpoint, no closure so people get stuck in the stages of grief. ( google stages of grief - a bit controversial but may help you gain some insight into how your father is reacting)  Sounds like your dad is in denial to some extent and / or ignoring the problems because he cannot face it but I could be wrong.,

Your brother.
Nothing really you can do here I would say.  Perhaps his limit is even lower than yours for whatever reason.  Have you talked to him about it?  there could be many reasons why he does little but perhaps he simply cannot face it.  Or it could be he does not really understand what is happening or it ould be one of a myriad of reasons.
As an illustration I had a friend with severe MS who I supported at home for a couple of years.  When she went into institutional care I simply could not visit her.  I found it too upsetting.  So in that way I failed my friend but I had reached the limits of what I could do.  I still feel guilty.
Chat to your brother about it but don't try to push him into doing more than he feels comfortable with as when people get pushed into situations they cannot face they often end up frustrated and angry and resentful.  Folk should only help when they WANT to not because they feel they MUST.  Ending up resenting your mother leads to family breakdown often when the support is most needed.

Practical stuff? Alzheimer’s society is a very good place to start. Perhaps thru them there are often lunch clubs ad the like for folk in your mothers position and also emotional support for people in your position.

Finally - your guilt and frustration perhaps stems from the conflict between wanting to do more and not being able to without taking compromises you are not willing or able to do.  I cannot stress this enough.  Once you have reached the limits of what you can do beause of emotional or practical reasons then you must learn to be content with that.  Be happy and glad for the help you can give and be content that while there is more that could be done there is no more YOU can do.  You have reached your limit and you must be satisfied that you have done all you can do.  YOu are no good to your mum if you push yourself beyond your limits as you will become frustrated, angry and resentful.  Do what you can and then walk away proud and content that you have done your best.  do not shy away from discussing your feelings with professionals. Alzheimer’s society may be able to offer you  some emotional support.

It s a horrid situation and one I see professionally often.  I hope these words help and if you want to discuss it more or more specifics then please feel free to PM me.

I can't comment on the situation with your relatives, but I would recommend that you try and make sure your mum is getting all the support that is available from the NHS, social services and other organisations (like the Alzheimer's Society). They can all provide different forms of support, but this can vary an awful lot from area to area. Sometimes they not very joined up, so it can take a long time to get people referred and receive help. You may find that you need to be persistent and keep asking (politely) to make sure things happen.

You say that your mum has been formally diagnosed (which is good, because sometimes even getting a diagnosis takes ages) but is she currently receiving any medical treatment? Again, there are a lot of different treatments available now (which may or may not be suitable for your mum's situation) so it might be worth checking the situation with her GP if you think she could be missing out here.

Thanks so much for the replies so far.

Oddly enough, a good friend who works in mental health has mentioned that it depression can often be misdiagnosed for dementia. Sometimes when I speak to her I have felt the same, but then when she totally loses where she is on conversations (especially on the phone) I do think it's dementia. I understand that she is on various medication. I know it has changed over the last couple of years and that she is also on anti-depressants. This has been a separate issue that she has gone to the GP about. She always feels more upbeat when she is given support and had things explained to her. When she tells me she doesn't want to be around and that she doesn't see the point I try and reassure her that that's the illness, not her. It's so difficult to hear my mum say that.

When I am home I will find out more about what the AS are doing with her now. I understand that someone will be assigned to come and see her once a week/every two weeks to take her out for coffee, help with shopping etc. She is still able to do many things on her own, feed herself, dress, shower, and go to the local shops. Anything more than that and she needs help.

tj makes some really good points I wish I'd known earlier... and probably puts into better words than what I was saying about your Dad and brother...

Alzheimers (and any other fading away) takes a huge hit on family and friends... so you need to find some peace for yourself but also for your brother and Dad...

As TJ stresses people can't do more than they are capable of or they more than their personal limits... and their reasons may not be apparent or easily explainable. Trying to push them to explain can just lead to more resentment both between family members and self resentment by them.  Even worse is when this goes with different family members then shifting this around... it can end up being like a bad version of pass the parcel.

Your uncle sounds like someone able to cope right now... and doing the right things so why not as him what you can do to help him rather than feel it's all down to you?

My dad also had Parkinsons and cancer... and all his medicines interfered... finding the correct dosage was a big part of the battle... (though you just have to accept its a one way thing and that itself is pretty hard)

I can't echo enough what TJ said... your Dad is losing a wife and from what you said has no idea how to cope with that so finding a way for him to get help could be a good thing rather than trying to push him beyond his capacity.

Yea, that's part of the fear on talking to him. I'm sure he is fighting his own battle inside, but maybe I just need to put my hand out and say that it's perfectly normal for him to feel that way. He needs to look after himself too. Neither of them have ever had any major health problems until now, so they probably don't know how to handle it. They can only go by what the GP/Consultant tells them. I need to find out more about that when I go home next.

Can you sit down with your day over a glass of something nice and get him to open up?  " How you feeling dad?"  "must be tough - can I help?"  that sort of thing.  Show you are there for him and willing to help but let him take the lead.

im abroad with a father suffering FTD. My mum is primary care giver and a big thing she noticed was that very few people ask how she is doing as the assumption is that the one with dementia is the one suffering. However it could be far harder for your dad depending on your mum's stage of her condition.

Dementia is a scary disease for most people as it's indiscriminate and essentially untreatable unlike other things you can expect into older age. I feel many prefer to avoid exposing themselves to the reality of the condition...

My mums circle of friends was fairly significantly reduced as my dad's dementia progressed. The support network is relatively poor compared to other diseases.

however, on the "bright side" has recently been diaganosed with AML so now he has far better care options presenting now that cancer is his illness and the friends support network has been bolstered as they nownhave now have a more understandable time frame on his ultimate death. His dementia is at the point where he doesn't understand what the implications of his lukemia are, nor what terminal means. He is basically emotionless now, however still physically able.

As above, consider your dad's emotional state and your brother also as his avoidance could very well be fear of also being on that path... As well as you mum of course if she understands the implications of what is happening to her.

I speak with my mum daily as her emotional outlet. It the least I can do as I'm unable to physically be there as much as she needs.

Col, totally understandable.  TJ’s posts are largely what I would have typed, but a lot better!

If you are looking for any formal information, PM me.  From a nursing perspective, Mrs JAMJ specialised in dementia care and education until quite recently and can offer her knowledge if needed.

Your father and brother should have been offered a carers assessment to identify if they are able and willing to continue their role of caring for your mum.

I think this is important because it recognises the carers role - and avoids the carers, who are typically family, feeling they are all alone and without support.

Dementia is a very frightening illness for all involved. And it’s easy for family to identify when a person is forgetting things and increase the persons anxiety .. which only makes things worse, or just feel worse.

During a what matters conversation with a person with a dementia diagnoses, I very often get told they just want their families to stop nagging and telling them what to do ...

An important thing we try is to promote the person to do as much things as possible to avoid deskilling them and losing their independence ... this often causes concern for family who are typically overly risk averse.

I would advise speaking to professionals involved with you mums care at the memory clinic etc.

I really feel for you OP. My dad was diagnosed with vascular dementia last year after noticeably declining in his mental health for a number of years. A short stay in hospital following a short but serious bout of illness basically pressed the reset button and he has never really gotten back to his previous level of cognition. He is still himself but the gaps in memory, behaviour and understanding are quite obvious to me now; until something dramatic happens dementia can creep up on the sufferers and those closest to them.

Unfortunately I've had no support from the family and it has been a hellish 12 months as a result. I must say that social services have been superb and a real source of support. I realised early on in the process of coming to terms with everything that there was no way I could hold down a full time job and make sure my dad was OK without the risk of him coming to harm when I was at work. I'm pretty sure I would have had a nervous breakdown if I tried and so with the help of social services got my dad into a nursing home close to my own home. I'm sure I've been incredibly lucky but the staff there have been brilliant in stabilising my dads health and providing him with company and safety. I pop in to see my dad most days of the week and he has gotten to the point where he is fit and healthy enough for the odd trip out at the weekends when I have the time. The important thing is I can get on with my own life knowing that when I am not with him that he is safe and not isolated.

Your dad, possibly with your support to set it up, really needs to get as much outside support that he can from professional carers. Without it he will only collapse under the weight and strain of it all over time. He may feel guilty (I'm still wracked with guilt from time to time) about handing over so much responsibility to others. If he is old school it will probably feel like he is giving up, but as others have said above everybody has different limits of what they can cope with. I was honest about my limits early on and it means I can focus on the important social and emotional needs of my dad whilst others take on the day to day routine and health requirements.

If you are able to sort out power of attorney for your mum do it now. I had to go down the court of protection route and it was time consuming and a pain.

All the best with whatever comes next.