Losing heart

Hi All,

I am TRYING to do the best for my mum who has MD and is also profoundly deaf. I have had to jump through hoops to get her the help that she deserves only to find that she is choosing to reject that help.

I had a wonderful lady from Support 4 Sight visit her last week who has left a magnifying glass for her to try and she also changed all her light bulbs to ones that mimic daylight. When she changed the bulbs my mum commented that they were a lot better and she could now see the room a lot clearer so please can someone tell me why she is still sitting in the dark with the blinds pulled. She is also not attempting to use the magnifier but she is using a LED torch instead to try and read even though she said using the magnifier helped.

I also had the sensory team visit her (both deaf and sight) and she was offered a wonderful door bell that flashes and is very loud. She refused this doorbell telling us that she had no problems hearing the one she already had only for me to find out that she wasn't telling the truth as she could not hear it but was relying on her dog to tell her if anyone was at the door and because she couldn't hear her doorbell she was constantly leaving the door unlocked so that people could just walk in. She refused to see that this is dangerous and brushed aside the concerns of both myself and my brother. She changed her mind about the doorbell within 24 hours so I then had to get back in touch with Social services and ask then to order her one.

I have fought long and hard to get her an appt with the low vision clinic (it took 6 weeks of battling with her GP and the hosp) only for her to now inform me that she is only willing to go to one appt and no more.

She is refusing all practical help the experts are giving her - like not wasting her money buying a bigger t.v. as it will not help (she is going out next week to buy a bigger t.v.), she was shown how to use her peripheral vision and not her front vision but refuses to even try, she was given headphones to help with her hearing but refused to even attempt to use these - and so the list goes on.

I know I may sound harsh but I am fast losing any sympathy for my mum as, although I am willing to get her all the help she needs, I am not willing to waste my time as well as the time of all the kind people that are trying to help her. My holidays in work are fast disappearing due to all the appts I am having to book for her only for these to be rendered useless as she is not willing to take on board what this people are advising her. The old saying of "you can take a horse to water.............." comes to mind. I am finding the whole process soul destroying as I know, if she took on board some of the advice and attempted to use some of the aids she has been offered, her life may be a lot easier. At the moment I am really considering backing off and letting my other two siblings try and deal with her as she has accused me of bullying her more than once by booking her appts. I never knew caring for someone you love could be so difficult and frustrating.

Sorry for the long post but I am at the end of my tether.

Moggie x

23 Replies

oldest • newest

Ayayay80

a year ago

Hi Moggie

Yes, you have indeed a dilemma. I can see both sides though. You obviously love your mum and want what is best for her and you have given up your precious time and energy to take care of her needs, probably putting your own health at risk with the stress of it all. You could not have done more. Be kind to youself and tell yourself that you have done all you can. And to hear from your mum that you are bullying her must be very hard to take. I am so sorry for that.

But step back a moment. What is it that your mum really wants - not necessarily what she should do. Perhaps she has become so used to sitting in silence and in the dark so that she has accepted her way of life. Perhaps in that way she is at peace with herself and the world. She still has her memories and her thoughts. Who are we to say what is in an other person's mind? I know from personal experience that isolation and loneliness can eventually turn to solitude and peace and to come to be preferred.

I sometimes sense that my son is trying to protect me in all sort of issues in a very subtle way, although my condition is no where near as desperate as your mum's. I resent it in the same way as I resent my fellow walkers trying to help me get over stiles. "Don't treat me like a wreck or an imbecile", I want to say. "Don't take away my independence. Allow me to ask for help if I want it, but don't force it on me, after all, 80 is just a number." Whatever you want to call it - independence, pride, dignity, stubbornness - some of us need to cling to it, others like the fuss around them. We are all different.

Give your mum a little time. Perhaps she will eventually realise the benefits of using certain aids and gadets. But the one thing your mum should really do is to keep her doors locked, especially since the dog tells her when some one is at her door. Sorry, I don't mean to lecture you; it is just that there are diffent ways of looking at an issue.

I wish you and your mum all the best. xx

Moggie

in reply to Ayayay80

Thanks for your thoughtful reply.

The trouble is my mum is not accepting her conditions, she hated being locked in her silent world and hates it even more now she has lost a huge chunk of her sight. All she is craving for is to be able to watch her t.v. again and when she hears, from experts, that this is not possible then she switches off and refuses any other forms of help.

I am not the sort to step in and try and take over when she is struggling to peel a potato or something similar as I know she wants to try and still do most things herself, plus I dont see her enough to interfere like that. Just lately the only time I see her is when I am taking her to one appt or another or I have made an appt for people to visit her at her house.

I have never known someone make you feel so guilty about trying to help them and by helping I mean taking her to hosp or GP appointments of trying to sort out government forms ect. A classic example was my brother phoning me up yesterday asking if mum has to keep having blood tests for her thyroid condition as, according to my mum, the last one she had has caused a trapped nerve in her arm and she is now in a lot of pain. I cannot tell her GP not to order blood tests as taking too much thyroid medication can be very dangerous so now I feel that I am being blamed - families, who'd have them!!!!!!

Thank you again for your comment.

in reply to Moggie

I see your problem, Moggie. I clearly got it wrong that your mum may have accepted her condition. She is obviously angry and frustrated and focuses her anger, unfairly, on you. It is often the case that the person who does most for another person gets most of the blame. That is so so sad. I had my mother live with me in her old age, so I know. There were times when I too thought, why do I bother? But you do bother because you care and she is your mum. I do think though, it would be a good idea to take it in turns with your siblings to take her for her appointments if at all possible. I suppose there is no point in trying to persuade your mum that her trapped nerve is not a result of a blood test, but if she is in that mindset she is not likely to listen. But most of all, don't carry your own anger and frustration around with you. I feel for you. Have a good cry if it helps to relieve tension, but never feel guilty. You have nothing to feel guilty about.

Thank you so much for your lovely reply and I can associate hugely with what you have said. I did have a good cry over the weekend at the unfairness of it all, not just for me but for my mum.

My brother and sister cannot, or will not, take her on appointments, my sister is not that way inclined as, even though she lives just a street away, she is the one that see's my mum the least and my brother does all her odd jobs and visit's her the most. I live an hours drive away and do all her prescription ordering online and speak to her GP over the phone so that works well. I think the lack of care being shown by my sister is also a big issue for my mum as she is my mum favourite and the reason my mum moved into a tiny village, in the middle of nowhere with only one community run (very expensive) shop.

Your words have given me the strength to plod on and try and roll with the punches but it is hard when you know you can do no right in your mums eyes.

Thanks you once again.

eyesright

Hi Moggie, sending you a hug x

Ayayah has given you good advice.

I can relate too, my mum in law was always falling at home but would not contemplate moving to a carehome until she developed vascular dementia caused by bleeds on the brain from the falls and the ambulance men tired of being called almost daily eventually flagged to her gp and she was moved on medical grounds (despite trying many times we were not able to move her against her will even though the decision she was making to stay at home was clearly not a safe one).

Similarly, my brother in law has brain damage but is fiercely independent and we have been at our wits end trying to keep him safe in the face of a social worker who has never seen him since he got out of hospital 6 years ago, a housing association who sacked the warden saying they couldn't afford to fund her, and the local support unit can't (won't) help him because he is too young!!! Luckily he is ex army and SSAFA have been fantastic. He also says one thing, does another, changes back etc. There is an element of not wanting to admit there is a problem and also of saying what he thinks you want to hear to get rid of you then he reverts to his old ways but eventually accepts some things like he never rejected them!

So, sorry that was a bit long , just wanted to let you see you are not alone x You are not bullying your mum even though she says so. The roles get reversed and you take on the parent role to their childlike behaviour.

There are three things that made a huge difference for us.

1 recognizing that unless and until your loved one is deemed mentally incapable you cannot legally force them into anything. They are entitled to live life as they wish even if that makes them miserable. For your own peace, if you have done all that you are permitted to do then you just have to let the rest go .

2 Depression affects peoples behaviour and can cause rejection of help. Get your mum's gp to assess her mental health (I told my b-I-l his Dr wanted to see him, not that I had made the appt ).

3 It is often easier for a third party to get results that family can't. Your mum may resist your advice/help but might be amenable to suggestion if you are not there. SSAFA volunteer has had a positive impact on my b-I-l , they have formed their own friendship and speak as equals. Is there an ageuk or similar volunteer?

I wrote before to you about PIP and using the funding to pay for home help etc - we now have a lovely lady who visits him and who prompts all the things we tried to but he listens to her! I confess we told him his Dr said he had to have her which of course was not true but it is a lie we can live with as it keeps him safer and eases our anxiety.

My advice is do the same. Get the PIP , find a good home help for her (explain the situation), and tell your mum it's an automatic thing once a person gets hearing &sight loss , she has to have this person for x months and there's nothing you can do about it, then back off a bit , monitor from afar and review as needed. You can then go back to being her daughter which is what both of you need.

I know not everyone will approve of the small deceptions we have used but I can sleep at night now because of them and he is not sleeping in a gutter somewhere which is where he was heading.

I wish you all the best x

in reply to eyesright

What a lovely, thoughtful, reply.

I have to say that my mum is still as sharp as a pin so to try and force things, like cleaners, on to her saying that her GP is saying she must would have her screaming the place down. After her last bad fall I did what you did and told her the hosp wanted her to see her GP (before that she wouldn't let me take her) and that is how I got to the bottom of all her undiagnosed illness's. Her GP had left her with untreated thyroid illness, untreated pernicious anaemia and very low vitD levels (hence why she has had to have so many blood tests recently) and any one of those can cause balance issues . That is all under control now as I also suffer with all three and her GP quickly realised that I had the knowledge to challenge and fight for what my mum needed.

Then came the MD, which I know nothing about, so I am learning on the job and trying my best but, like you, I have found that it is charities that are helping the most and not the people that should be. But the biggest problem is my mum herself and her refusal to accept this illness and to change her lifestyle to suit.

I did get in touch with AgeUK but found them not very helpful. Funnily the Suffolk branch I spoke to were really good but my mum had to be transferred to the Essex branch and that is where it all went wrong, so I walked away from them and got in touch with the CAB to help with the government form filling aspect as, apparently, filling in some of the required forms yourself is not advisable.

I dont know where I would have turned for advice and support if I hadn't found you guys on here as there is no one better to advice than people who have first hand experience of what my mum and myself are going through so a huge thank you from me to you all.

Bless you x

Tell your mum the home help is a "government " thing that's "automatic" due to her disabilities and crazy as it sounds it can't be cancelled until after x months..... She might accept that as we all know how crazy some bureaucracy is! And kids make a fuss about eating their greens but we let them shout then hide the veg in something else! Also, when the woman turns up your mum might be too polite to turn her away......then she might find she likes it . I think it's worth one last try then at least you can know you did everything humanly possible and you won't blame yourself for anything that might go wrong later.

I would be amazed if your dear mum isn't suffering depression given the impact of md on top of the deafness.

Re volunteer help - if your dad was ever in the forces I think SSAFA will help your mum too.

Take care x

Thanks once again. My dad was never in the forces so SSAFA is not an option.

My daughter has been cleaning for my mum for over two years now so, when she gets her Attendance Allowance money, my daughter is going to give up a day's work in her normal job and clean for my mum instead. That was the only way we could get my mum to accept a cleaner. Trouble is she then stops my daughter cleaning as she just wants to chat and both myself and my brother have made it clear that, when my daughter is being paid, she needs to let her clean and not interfere as her home can become very grubby quickly as she has a very messy dog (plus my mum has never been what you might call house proud so getting her bungalow cleaned on a weekly basis is a must).

Thanks again for your support.

carolineJames

It's a pride issue I am sure. My Mother doesn't like help but will accept it from her teenage grandson. He will link her arm and tell her where steps are and uneven paving stones and what's happening across the road as they walk together. She needs his guidance and she knows it but she will scold me for exactly the same behaviour and for treating her "like an invalid". Find someone else to give her advise. Maybe you are too close. Maybe you need to tell her you are doing all this because you love her and care about her. It's obvious but unlike the Americans, us Brits aren't that good at saying "I care and I love you"- maybe she needs to hear it out loud to remind her you are not the enemy. She used to tell you what to do- maybe she finds the role-reversal thing too hard. Different people have different affects because they have different relationships. Lots of maybees - if all else fails pour yourself a large glass of wine after dinner and it will all seem better then anyway!

in reply to carolineJames

Thanks for your comments.

My mum is the same with my daughter as your mum is with your son. She will let my daughter do lots of things that she will stop me from doing - maybe it's a personality thing or, like you say, she cannot accept that people she has looked after all her life are now having to look after her.

I dont think I have ever been told by my mum that she loves me and visa versa, we are just not that sort of family. My mum is quite a hard, stiff upper lip type of character so showing any sort of emotion to her is a weakness I think.

The funny thing is she will tell other members of the family how she appreciates what I am doing for her but say's nothing to me, she will even tell me off but then praise me to other people. My brother is always telling her to tell me how much she appreciates what I am doing for her but, so far, that hasn't happened - in fact the reverse happens and I only get to hear about the things she doesn't like, or want, me doing.

I will plod along and see how I go but if things really do get too much for me I will be handing over some of the responsibility to my younger sister, who has done almost nothing since her bad fall back in March last year.

Thanks again.

Rosalyn-helpline

Dear Maggie,

I was sorry to read of your frustrations.

In terms of your query:

"When she changed the bulbs my mum commented that they were a lot better and she could now see the room a lot clearer so please can someone tell me why she is still sitting in the dark with the blinds pulled."

Many individuals with a macular related condition develop a heightened sensitivity to glare. this can apply indoors as well as outdoors. The glare comes from the blue light in the spectrum. Although the blue light indoors is not believed to be damaging to the macula it can cause discomfort. This often leads individuals to reduce the amount of light coming in to attempt to address the glare issue. An alternative way of dealing with this is to try a pair of yellow anti-glare protection spectacles inside. They do not reduce the amount of lighting coming in, but also help to increase contrast and definition. It may be worth trying these in case it does address the issue. You may find that as a result your mother is willing to have the blinds open again. Obviously she needs as much light as possible to make the most of her remaining sight.

Please see the related links below:

macularsociety.org/sites/de...

Please contact us for suppliers details.

Please do not hesitate to contact us for further discussion.

Our Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Kind regards,

in reply to Rosalyn-helpline

Thank you for your thoughts. We have an appt with the low vision clinic in a few weeks time so I will put your idea of yellow tinted glasses to them and see what happens.

The light bulbs she had fitted by Support 4 Sight are especially designed not to cause any glare and you really could notice the difference when they were changed. She seemed really pleased with them and said how much better they were so whether she has just got used to sitting in the dark or is just flatly refusing to accept any changes I just do not know.

I have just read the link you sent me and will maybe look at getting her a pair of yellow tinted glasses to go over her normal glasses to see if this helps, so thank you for that.

One question I do want to ask, because I am getting conflicting information, is whether my mum needs to keep going to an optician. The Social Services sight chap told me that glasses only correct the front vision in the eye and this is what is damaged in MD so it would be a waste of money for her to keep renewing her glasses - is this correct??????

Hello Maggie,

In terms of the opticians, an important part of the sight test is the health of the eye, so it is important that your mother keeps on attending. They will continue to check for the presence of any other conditions which may appear and may need addressing and may e.g. potentially affect peripheral vision.

Whilst sight is relatively good, then individuals can generally manage with varifocals or bifocals if preferred. However, if there becomes any noticeable impact to sight, then generally single vision lenses are preferable; separate for close up and distance vision. It is then generally also advisable to avoid transition style lenses and opt for anti-glare spectacles instead.

It can get to the stage where the optician is unable to prescribe any stronger lenses in spectacles. If your mother is at this point, then constantly replacing them would obviously be a waste of money.

Just to make you aware, the impact of the diagnosis of any eye condition and indeed any stage in the process is generally compared to experiencing bereavement. Individuals frequently go through very similar feelings and responses and in no set order.

Please see the following organisation for potential support:

Deafblind UK

National Centre for Deafblindness

John and Lucille van Geest Place

Cygnet Road

Hampton

Peterborough

PE7 8FD

Telephone: 01733 358 100

Email: info@deafblind.org.uk

Website: deafblind.org.uk/

Kind regards

in reply to JJnan

Thanks for the reply and yes you are right about her wanting to chat but, unfortunately, her house is not very clean - so much so that certain members of the family will no longer eat at hers or take young children to visit. So my daughter cleaning is a necessity not a luxury and my daughter is the only one she will allow to clean. Both myself and my brother are over there this weekend for dinner (cooked by me) and my brother also visits at least 4 times a week. She will not go anywhere for dinner, we have tried, except to my sisters who lives in the next road but unfortunately my sister is the one that does the least and has even stopped having her for Sunday lunch most weeks. I really do feel for my mum over this as my sister is her favourite and I think my mum thought that she would be the one to really step up to the plate if anything happened and that just is not happening and I know my mum is upset over this.

She does get quite a few visitors who just sit and chat, but my mum would chat 24 hours a day if she could, more visitors than a lot of elderly people I know so in that respect she is luckier than most so I think it's about striking a balance. We need to keep her clean and safe as well as giving her the company she needs.

OMG I have just checked out the gov website. Cannot believe the difference in rates of PIP v attendance allowance and the cut off age of 64!!! Just do not understand what the govt is playing at. I am so very sorry for you, we were lucky PIP was given (although did have to fight).

I am also shocked to see that your poor deaf blind mum does not qualify for the top rate. Is it possibly a case of your underreporting her needs ? Ie she doesn't have someone doing certain things is not the same as she doesn't need it doing if you get my meaning?

The PIP is awarded based on impact of condition on life not what help a person actually has or will accept. Don't understand why Attendance Allowance is different, it ought to be just one system with a sliding scale for everyone.

Bless you and your daughter, it's all good karma x

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