Somebody help please

[Loganberry]

I have posted a couple of times about my 87 year old parents. Mam has undiagnosed advanced dementia, both of them refusing any medical intervention. She has had one gp home visit, instigated by me behind their backs but now refuse to have any more visits. Blood tests revealed B12 deficiency but she will not entertain any treatment.

Anyway, I rang them 30 mins ago, dad answered and handed me straight over to mam. Bit chit chat (struggle) as usual then I ask if it's ok if we go over tomorrow. No she says cos she won't be there, she's leaving (this is common place, my dad gets the brunt of all her aggression and accusations ). Then she hangs up!!!!

Question is, what do I do? Even at this late stage of her dementia my dad will not go against her. Do I try to ring back and aggrivate things further, can't just turn tomorrow cos 1. it's a 2 hour round trip on public transport and 2. it will just be me and my 10 year old who gets scared when Gran is being "weird". Pointless rinigng gp cos he won't be allowed access.

Want to support my dad but can't cos he won't go against her and he shuts us out. I find it heartbreaking that he won't get help and to be honest I would love to run away from the whole situation

 

[ggma]

Just want to say, my sympathy at your very upseting position, it is so difficult to do the right thing, but non of us can just walk away and leave a parent struggling.
How very difficult for you, but your Dad has to be the first to accept help otherwise nothing will work. Don't feel guilty you are doing your best and others should be supporting you and your Dad. At some point your Dad will have to accept that your Mum needs help sadly it may take a crisis for that time to be reached.

If your Mum will not accept help, then would your Dad agree to a Carer's assessment about his needs?

Only you can decide about visiting tomorrow, if you do not feel like phoning back tonight and seeing if in half an hour your Mum is in a different mood, why not phone your Dad in the morning just to confirm you are visiting so he knows to expect you.

How very difficult to have to make a 2 hr journey and take a young child with you, when people are exhibiting frightening behaviours it is alarming for children, and makes it really difficult. Is there no one you can leave your son with just for once?

Take care and hope th ings are better than you fear tomorrow.

 

[Loganberry]

Thanks for your kind words. Re the carers assessment, I arranged for the CPN to visit, she didn't get into the house either, he talked to her in the garden .

Hate hate hate this horrible disease!

 

[Nan2seven]

Dear Logan,

You are in such a difficult position and my heart goes out to you.

In an earlier post you said that your mother's short term memory is pretty well gone, so she will not remember having spoken to you this afternoon. I think your best plan would be to ring either later this evening or tomorrow morning and say you were hoping to go over and visit your parents and would this be all right?

Your father has rung you in the past when things got difficult and of course you were not able to leave your children on their own. He must realise that you cannot "drop everything" to get over to their house, so I am thinking that in his heart of hearts he would like you to go over tomorrow to visit in spite of the earlier "conversation" with your mother.

You said "he won't go against her and he shuts us out". I am hoping that this is meant figuratively rather than literally. Would he turn you both away at the door? If there were any chance of that happening, I think you need to get that sorted on the 'phone before you set off and NOT GO if he cannot reassure you. He would then surely realise that he is on his own and, bless him, needs to realise that he cannot cope totally on his own. With the little you have told us, I am surprised he has managed to cope as long as he has. There is no shame to accepting help when someone is as ill as your mother is, but of course it will take a lot to convince him of this.

This is just my own personal take on your situation. I hope others will come along with views of their own as well.

Thinking of you and sending love,
Nan XXX

 

[Loganberry]

Thank you Nan, your kind words made me cry! There has been no call from my dad (he never rings anyway), I can't face it tonight, I will ring tomorrow to see how the land lies.

You are right in saying my mams short term memory has gone, but so has her long term now, she has no clear memories from the past at all and makes up stories instead . She also has periods where she doesn't realise she's at home, this has only started lately. She wanders given half a chance and when she can't get out the house she shouts through the letter box for someone to call the police . I don't know how my dad tolerates this and if I'm truthful, I worry that one day he won't be able to.

Hopefully we will get the chance to visit tomorrow, my mam adores my daughter, but has started to say inappropriate things to her that frighten her (and me).

Do you think it would be worth contacting their GP again?I have several times and they've made it clear that if my parents don't want help their hands are tied.

 

[Nan2seven]

Hallo again, Logan,

I didn't mean to make you tearful. You've obviously reached a very low ebb. (And I do worry that your dear dad will do the same. Much better to try and get some arrangements in place with regard to help for him before a crisis occurs, if it is at all possible.)

Sadly, most people with any form of dementia reach a stage at some point where they do not recognise their own home - the not recognising comes and goes (or did in my husband's case) but can be difficult to cope with sometimes. And of course there is the problem of not recognising their "nearest and dearest." Your dear dad is probably trying to cope with all of this and not wanting anyone else to know. Would it help him, perhaps, if you were to print off some of the Fact Sheets that can be found at other parts of this website? I am afraid I don't know how to provide a link but there is lots of information that would certainly help him.

The GP is in a difficult position but I think he does need to have more information than he has at present. I would put it in a letter so that it goes onto your mother's file. Try not to be too wordy, perhaps a list of "one-liners" of things she cannot do for herself, odd behaviour (like shouting through the letterbox, etc.), any acts of aggression (you may feel you are in some way betraying her, but if it brings your dad some help and perhaps even some medication for your mum, you will in fact be helping them both), and anything you can recall in the way of inappropriate remarks to your daughter. Add anything that will help the GP to get a true picture of what your dad is dealing with.

And as for you, dear Logan, if the children have gone to bed, pour yourself a little glassful of the falling down water if you have any in the house, or make yourself a warm milky drink. Get your jim-jams on early and sit around in your dressing-gown with a hot-water bottle if you fancy. Get yourself warm and relaxed (oh, so easy to say) and try to get some sleep tonight. Tomorrow is another day and it might not look quite so bad then.

If you do go and visit, I hope it goes reasonably well for you. If you decide not to go, sit down and start on that list and get it into the post on Monday - ah, Tuesday. Forgot the Bank Holiday.

For this evening, indulge yourself. Take care,
Love,
Nan XXX

 

[rajahh]

I do not feel able to comment properly about your post, however I do feel for the 10 year old.

I do think you may have to step back and as someone else has said let a crisis happen.

I do not think for one min=ute that will be easy for you, but even if you are told it is okay to visit as the short term memory is gone you may get there and face bad scenes anyway.

If the GP knows they will be refused I cannot see the point of ringing them.

Selfishly= I would take my 10 yr old out somewhere for a treat and have a day for you and him/her

Truly you can only offer and do so much.

My own husband can be and is difficult, and many times I just have to walk= away and leave him to it even though there are risks.

Jeannett5e

 

[ggma]

Just wanted to say that in my experience the suggestion that you list all the unusual things happening at your parents, all the things your mum does, is a really useful thing to do. Professionals can only help if they understand how bad things are, the GP does need the information on record, and it might be worth you trying to book a call to speak to him and explain just how bad things are.

Your father is in such a difficult positon and if he can not stand up to your Mother, he needs you to be strong for him.

Best of luck really feel for you, hope you can get your Dad to agree to accepting help for your Mum soon.

 

[Nan2seven]

Good morning, Logan.
I hope you managed to get some sleep.
Whatever you decide to do to-day, take it gently.
I think the idea of a day out with your children is a good one.
If you feel like it, post at the end of the day and let us know how you got on.
Sending love,
Nan XXX

 

[Grannie G]

Hello Loganberry

My husband wouldn`t have anyone in the house to consult with him or examine him. I knew he was frightened and I suspect your parents are frightened too, of others taking over or of being forced to separate.

The first person I saw was an advocate who I met in a cafe, it was so impossible to talk to anyone at home.

But then I told my husband I needed help for myself and whoever came was seen in the kitchen.

Perhaps you might be able to convince your father no one will make him do anything he doesn`t agree to. If he can understand the help available will make life easier for him, he might agree.

Your mother doesn`t have to agree. She will be unable to enter into a reasonable discussion, she will be too defensive or too afraid.

 

[Loganberry]

Thank you all so much for your kind words and advice .

Well, I had a lovely morning in town with my daughter and rang my dad from there. He sounded in good spirits and told us to come over, so off we went, me still feeling sick worrying what would be waiting for us.

Anyway, mam was in really good spirits, but I was shocked at how old she looked(yes I know she's 87 but she's always looked a lot younger) and she also looked quite grubby. It's only been a fortnight since I was there last. The house is looking shabby, needs decorating and re-carpeting and has an awful musty smell.

I spoke to dad, he is finding her nastiness very hard to cope with, along with her hiding things and wandering off when they are out. I broached the subject of support yet again but he just won't have it, I even tried asking if he realised that if something happened to him it would be so hard for me to sort mam out. His answer is still that there is plenty money, I can put her in a home , yeah, easy as that eh?

Anyway, I sat and chatted with mam, she seems to be losing her language, struggles to find the right words and sometimes doesn't make sense at all. She tries to describe to me how she is feeling, but can't.

So, at least I managed the visit, but no further forward and don't feel much better. Thanks again everyone for your support! xx

 

[ggma]

Glad it was better than you feared and you had a good morning. The important thing is that you can talk to your Dad and he knows you are there. If he is not yet ready to accept help, then you can not do much more than be there for him. Things will change, and it is so sad that you have to wait for a crisis to be able to get support in.

Sounds as though your Mum is really not well, but she probably is not able to realise any more what is needed.

All the best, keep posting and like us all, take one day at a time.

 

[Missy]

GOsh, I feel for you. We are in a similar position with my MIL and FIL. Mother in Law has alzheimers - moderate, not that far off severe, and father in law is blocking all our attempts at arranging help whenever he can (we live 250 miles away! He sacked the carers we persuaded him to have after a two year battle! He won't go against my MIL, there is nothing we can say or do to make this happen.

I think the advice one day at a time is very good.

 

[zeeeb]

I think if they want to refuse medical intervention it is their choice, and it should be respected, no matter how illogical it might appear to others. It might be the only thing they can control about their health. What medications are really going to be of any help in any case? At 87, with dementia, it's mainly about reducing pain, and maybe something to stop the aggression, calm them down a bit.

But, i'm a big advocate for not forcing treatment. They are adults, and if they don't want her life prolonged by buckets of tablets each day, then that is their choice.

It's a shame that your dad has to cop her aggression and moods etc. But you can't force help on people if they don't want it. It must break your heart to watch it all go on, and I feel for you, but it sounds like they just want your love and support, not you telling them what they should do. Must be hard for parents to let go of the control and let their children make decisions for them, very un-natural for some people.

 

[Loganberry]

No, really, I'm not trying to "force" any medical treatment on my mam. I've had many, many conversations with them both over the years regarding terminal illness and I am very clear as to what their views are. However, I'm talking about quality of life. Believe me, at the moment, and by my dad's own admission, they have none. He has also told me that he gets lonely . I also fear that one day he will snap and don't even want to think further on that one.

I just feel that some sort of practical support may make day to day living more bearable for them both as I don't live local and work full time, so can't offer the support I would like to. I also feel that my dad is blinded by loyalty to my mam and is not thinking logically, it's going to get worse and wouldn't it be better to have support in place? Really though, I don't want to "make" them do anything.

Logan

 

[Tooshie]

No, really, I'm not trying to "force" any medical treatment on my mam.

I also feel that my dad is blinded by loyalty to my mam and is not thinking logically, it's going to get worse and wouldn't it be better to have support in place? Really though, I don't want to "make" them do anything.

Logan

Hi Logan,

Can't sleep, had another tough day with Mother, so thought I would drop by.

I recognise the anguish in your posts, the frustration, feelings of helplessness and the fear that you are in a way neglecting your parents by not taking any action. Believe me, I feel all these things myself, and the only response/gratitude I receive in return for my concern is aggression and viciousness.

When we are feeling vulnerable, as I describe above, we post cries for help on here. Always there is sensible advice and information from the kind people who reply, but sometimes their chosen vocabulary can be harsh. When we are at our most vulnerable, this can be hurtful. Consequently we post a reply, feeling the need to defend ourselves and justify our comments and actions.

Reading your posts, you have a very challenging situation to cope with. We all know that there is no definitive answer, no specific path to take that will miraculously solve all your painful issues - and so do you Logan. But we all come here for one common purpose - we are all afraid and we seek advice. reassurance and support - the precise purpose of Talking Point. Heaven knows that there isn't much available to support the carers and families of this terrible disease. So please don't feel that you need to defend yourself - there is nothing wrong with the things you have written and your expressions of concern are quite 'normal'.

So let us all remember that we are all different, and when posting replies we should take care to consider how our words may land on those who are also hurting and afraid, and moderate our language.

x

 

[CollegeGirl]

Hi Loganberry

We seem to be in a similar position - my dad is carer for my mam and is struggling to cope and yet up until very very recently has declined any offers of "professional" help. Luckily I live nearby so I can help, but this has started to impinge on my own mental state, I'm finding things very difficult, while recognising that it's 100 times worse for my dad.

Professional help seems to be very slow in coming and I'm worried sick that something will happen to my dad, he's told me today that he feels ill. I've tried to contact the social worker but she's out, and will only be in at certain times tomorrow which are difficult for me to ring during.

I feel as though I'm banging my head against a brick wall. I wish I could just DO something.

To be honest I wish that this would just all go away and that we could all just have a normal life again.

I would include you in that wish! And everyone else on here to be honest. This is a horrible disease.

Take care xx

 

[For Grace]

Dear Logenberry

I'm so so sorry to hear your predicament. Though I'm new to this site I'm not new to being connected with Alzheimer's, my mum was a sufferer and I was in a similar situation as you, except it wasn't my father acting like yours it was some horrible, manipulative man who'd moved in with my mum. Anyway, besides all that AND because of all that I contacted the Advocacy for the Aged (sorry can't remember its full title) but they sent someone in to review the whole situation; it did help, hope this helps you too.

 

[Witzend]

Hi, Logan, so sorry you've got all this worry.

Sadly it does seem so common for the elderly of that generation to refuse help. I have a feeling it's often partly down to a 'grin and bear it' attitude - they feel they ought to be able to cope, and admitting that maybe they can't is a sign of weakness that goes right against the grain with a generally more stoical generation.

Also, there is sometimes or often a deep mistrust of Social Services and anyone associated with them. Rightly or wrongly they are perceived as bossy/interfering/patronising, and there is often also an old idea that they were needed only by the feckless and improvident. Plus of course the idea that once they have been allowed in they will take over or separate a couple 'for their own good'.

If any of this might apply in your dad's case, maybe you could emphasise the 'home help' aspect, and stress that there would be no question of anyone overriding his own wishes.

I have known personally an elderly couple, friends of OH's folks, where he was struggling for years to cope with a wife with bad AD. Sadly, largely I'm sure because of the reasons above, he refused any help until a crisis occurred - when he fell and broke a hip and literally couldn't cope any more. Somehow this triggered a complete change of attitude. They went into different CHs - at his request since by then she was so bad that she would have given him no peace- and he told OH that finally he was having a life again and wished he'd done it a couple of years sooner.

We certainly got the impression that it was a great relief to him that the fall and fracture took the decision out of his own hands, so to speak, but equally, if it hadn't been for that he'd have felt morally obliged to continue stoically 'soldiering on'.

 

[Nessa456]

Can I ask whether your father might have mild dementia as well?

In my opinion the situation probably needs to be brought to a head by insisiting on both your parents being tested by your local memory clinic for dementia and then getting carers to come in and help them or looking to possibly move your mother into respite care for a short while to see how it goes

I would say you need to be the main advocate for both your parents now and do what you think is best for them ie they are probably no longer able to advocate in their own best interests.

You need a psychiatrist from the local memory clinic to assess both your parents to see if they lack mental capacity - it sounds as if your mother almost certainly does. Once this has been proved you can decide on the best way forward ie you will be making the decision not your parents. Letting your mother and father still dictate what happens could lead to one or other of them coming to harm at some point in the future if your father is having problems coping. It's their safety that needs to be the main concern.