The Beginning - Mum has dementia

[Christie66]

Hello, I am Christie and my mum, who is 87, has dementia.

Mum was a nurse, a college lecturer, a single parent with me, strong and competent and has always been on top of life .

These past two years, something has changed. She has become smaller, hunched, had a couple of falls and had to be persuaded to walk with a stick for her own safety. She has also been forgetting things - times of appointments, what day of the week things are meant to be happening. She stopped managing shopping as well as she used to - her fridge and cupboards are suddenly practically bare. And she started saying she had seen everything before. Any TV programme - "I've seen this", any funny Facebook clip you show her on your phone "I've seen this already, it's been on telly," and even people in the street, "This man is always walking round this corner carrying that bag." It was a bit of a joke at first, to be honest. But she didn't think so, she was so serious about it.

Then just before Christmas, she came home from town having taken out a contract on a mobile phone, and a tablet and she didn't understand what she had done. I asked her if she thought she might have some sort of memory problem that we should perhaps go to the doctor's about. She reacted in anger: "Don't tell me I've got Alzheimers! Don't say that! It would just finish me off! And anyway, I'm fine for my age, you should see So-and-So, they are far worse than me. It's just my age! There's nothing wrong!" I told a few other family members and everyone kept telling me she was absolutely fine. I was so upset that night, I stayed at her house, and in the night I climbed in bed with her like a kid.

After a lot of thought and worry, I decided to write to Mum's GP with a list of all the things that worry me about her behaviour and to ask if something could be done. I didn't get a response at the time, but a month later the GP phoned me, saying she would break confidentiality because of a safety issue that had arisen - Mum had fallen in the bathroom and the GP wanted me to check safety in the house. The GP also said Mum appears to have a mild cognitive impairment, but that she can't do any tests at the moment because of lockdown.

So now we are in May and I am coming to terms with the new situation. Rightly or wrongly, I am treating her house and mine as 'one household' and coming to see and stay with her at least twice a week (I am observing social distancing and I currently work from home). Mum is still fully independent but she can't amuse herself any more. She doesn't want to watch tv, read books, draw, do any of the things she used to. All she wants is one to one attention from me, to talk, to do things with me. When I am working, she is just sitting in her chair, waiting for me to finish. She sometimes shouts up to ask me if I've finished working yet.

So that is me, and that is where I am at right now. Thought I would say hello.

 

[Grannie G]

Hello @Christie66. Welcome to Dementia Talking Point although I know it`s not the place anyone would choose to be.

I don`t really know what to say to you. It`s difficult enough when you are living under the same roof with a partner, so living in separate homes doesn`t help matters at all.

I remember when my husband was unable to occupy himself and it`s very tiring but at least we were together.

When my mother lived in her own home I know how dependent on me she grew. I was also working full time and the stress was awful.

I did manage to get day care for my mother but it was easier then.

Social distancing makes it even more difficult to get someone in for some form of companionship.

Perhaps a phone call to the dementia connect helpline might help.

https://www.alzheimers.org.uk/dementiaconnect

Call us for support on 0333 150 3456.

 

[canary]

Hello @Christie66 and welcome to DTP

Yours is a very familiar story, with very familiar concerns.
I think writing to the GP was an excellent idea and hopefully once lockdown is over and clinics start to book appointments again your mum will get a proper diagnosis.

In the meantime you might want to contact Social Services for a needs assessment for your mum, so that after the lockdown you could perhaps get her referred for day care. I think she would do well with daycare - they will be able to keep her occupied and give you a break too. Its just such a shame that everywhere is closed at the moment.

 

[lemonbalm]

Hello @Christie66 . Well done for writing to your mum's GP. It is frustrating that tests will be delayed but at least you're on the right track. My mum went for years without a formal diagnosis. I hope that yours can be persuaded to go ahead with tests and assessments. You might have to tell a few kind lies about what they are for. It sounds as though your mum is managing pretty well at the moment and you are obviously a very caring daughter. My mum gradually became dependent on me for everything (although she would never have admitted it and I would never have said so to her!) and I ended up spending every day with her for several years, even though she lived in her own flat. I don't regret that time at all but I think @canary's suggestion of daycare is definitely worth thinking about, otherwise you will have no time for anything else. You could refer to daycare as a club of some sort to persuade her to try in once the lock-down is over. Keep posting about anything that concerns you. There is lots of friendly help available to you on here.

 

[Whisperer]

Dear Christie

Some good advice has already been posted. We Both tick many of the same boxes, me caring for my elderly mum. Diagnosed with Mild Cognitive Impairment in 2015 now refusing to go back to the Memory Clinic despite the GPs best efforts. “If I am going doally I do not want to know. “. Other times nothing wrong with me for my age. Short term memory now completely gone so every time we see the news Coronavirus is all new to her. Longer term memory not so great. Other issues lurking in the long grass.

One thing I would stress is sit down with yourself. Lockdown has slowed matters down like going to a Memory Clinic which is not good, but at the same time it has bought you some time to review. Do you have Lasting Powers of Attorney in place or if not try and do so to help in the future. Seek out the compassionate caring thread and have a read. It will help you better understand how love lies work, what will help and what will not. Bit like learning to speak cat, Dementia as it develops will require different and fine tuned skills from you.

Your comments were informed, calm, focused, all good things to have. Just be aware caring will bring emotions as well, the guilt monster will no doubt arrive at sometime. Have I done enough can become a common question. There will be things to tackle, but always focus on two thoughts in the future. Perfect is not required, good enough will do. You are part of the solution not the problem, even when things might be tough. Be gentle with yourself, allow time to take in the changes which are happening, it is okay to come here and rant if need be. This is a safe and non judgemental environment with members who have knowledge and experience to draw on. Others have kindly answered my queries, offered advice, etc. Do not be a stranger having now found this forum.

 

[Bunpoots]

Hi @Christie66 welcome from me too

I used to look after my dad who lived by himself and the advice I received here was invaluable. One of the things I found useful when it came to communicating with dad was this

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

It’s not always easy to follow but works surprisingly well when you can.

 

[Toony Oony]

Hi @Christie66 - as others have said, a lot of the behaviour described in your post is very familiar.
Well done in contacting the GP.
I made a very conscious effort to build a relationship with Mum's GP and also the Consultant Psych at the Memory Clinic. Mum retained the ability to behave very normally when 'in polite company' and with officials for a long time. As usual they did not witness what was going on behind the scenes. Very early on I managed to get the email address of the GP practice and the Memory Clinic. Prior to any of Mum's appointments I would send a quick resume of what had declined/developed since the last visit. I gave all my contact details and as things progressed, the GP often rang me to talk about Mum's condition.
Do try and get POA as soon as possible.

 

[Christie66]

Thank you to everyone for the warm welcome, suggestions and kind words. It's really nice not to feel alone with it and know that others are going through / have been through the same thing.

I liked the comparison from @Whisperer with 'learning to speak cat' - yes, it's requiring a different way of communicating. @Toony Oony that's interesting about the normal behaviour 'in polite company' - I hadn't thought about it that way, but that is what my mum is doing and is, I think, the reason other people have been slow to see there is an issue. At first, it felt almost like she was gaslighting me - behaving in a really odd way with me, then acting normally for others.

It seems that denial can be part and parcel of this for some people, including my mum. So frustrating. In addition, she has been very down over the past few days and yesterday she looked at me with big sad eyes and said "You know, I have this awful feeling in the pit of my stomach that something is very wrong." She was looking at me as if for answers. I looked back at her, trying to work out how to respond, and I was so tempted to say, "I think you do know what is wrong though, really. Can we talk about it?" The person she was 10 years ago would have been fine with that. The person she is now would not, so instead of that, I said "I think you need to get out of the house and see some sunshine, how about we go for a walk in the park?", which is what we did.

A few people have mentioned power of attorney and I do in fact already have that because in 2012 just after she turned 80, Mum sorted it all out. She also sorted out and paid for her funeral I believe. I have never paid much attention to the power of attorney documents, but I remember having to sign something, and I have all the paperwork filed. At the time she said "It's in case I get Alzheimer's or anything". I think she probably saw it coming, or at least suspected it might.

The main thing I am struggling with at the moment is the loss of the person she was. Both on an emotional level, and in practical terms, she is always the person I have gone to. I guess I am lucky, for the best part of 53 years, to have had someone who always knew what to do . Over the past weeks I have found myself talking out loud to her, to the person she used to be, a bit like you might do after a bereavement. I do it especially when I'm driving. Sometimes the 'imagined replies' she gives me are quite useful - so somewhere I must have internalised some of her way of thinking & life skills!

@Bunpoots Thank you for the link to the Compassionate Communication thread - I had a read through that last night and will be revisiting. Very helpful. Will also look out the Compassionate Caring thread - thanks @Whisperer.
@lemonbalm Yes I think my mum is starting to become dependent on me in the way you describe your mum doing, and similarly she wouldn't admit it - it must have been frustrating being without a formal diagnosis for so long.
@Grannie G thank you - I've made a note of the the dementia connect details. Sounds like you have cared for two loved ones with dementia - that must have been tough. @canary yes, I think daycare could definitely be a good idea going forward - I shall look into it.

 

[Whisperer]

Hello Again Chritie66

Just to save you time I meant the compassionate communication thread not compassionate caring. Sorry my mistake.

Perhaps I can offer some other advice based on my own experience. In many ways you are me a few years ago. Took me a while to get onto this forum, get in a carers group, not face everything unfolding on my own in the drivers seat so to speak. I felt at a loss “losing” the old confident, vibrant mum. Someone I could talk to when in doubt, run an idea past Knowing I would get an honest and informed answer, perhaps most importantly have a laugh with. The following helped me come to terms with things.

1) I picked up a mental image to concisely describe to myself what had happened. When you are young your mother asks for your hand to get you safely across the road. You trust this all knowing, powerful, wise, loving figure in your todate brief life. Later in adult life you get yourself across or in another loving relationship (husband, wife, partner) you just walk round holding hands. Now in later life mum gives me her hand when we leave home or cross a road. Now I am the wise one, guaranteeing our safety. We have come full circle in the cycle of life. At this level it is natural, but Dementia just takes this process to a much higher level of dependency. You would not push a developing child away, in the same way you must accept this developing dependency. Better you there to hold the vulnerable hand rather than a stranger.
2) It will cause more emotional pain if we seek to deny what has happened or delay our acceptance of it. There is a scene in the Apollo 13 space movie where three men desperate to get home to Earth start to fall out with each other. The commander yells “we are not doing this gentlemen, bouncing off the walls for ten minutes because in the end we will still be right here facing the same problems”. whenever I get confronted with a new issue, or mum says something that hits home I look at the wall and think waste ten minutes or deal with it right now. It just calms me, gets me on the right page, etc. It can never take away the emotional hit but it deadens it. It is not giving up on remembering what I had in past times, just the recognition mum has changed, either deal with it the best I can or bounce off the wall for god knows how long then deal with it.
3) Please remember what I said before about taking time to adjust to the changes taking place. Google anticipatory grief to more fully understand what is causing the upset. Someone in my carers group once said a loved one only dies from cancer once, it is all embracing, terrible to get through but it is over. With Dementia there is a succession of little deaths, each an emotional blow to the carer. What makes it harder is the Dementia sufferer is often unaware of their capacity loss, it is just recorded by those around them.
4) I have accepted after much soul searching mum’s reluctance to accept her condition. Even saying that I am most likely wrong In my interpretation of events. Where does denial end and Anosognosia begin. Please google that word and read. Another poster here named Canary gave me that light bulb moment sometime ago. If my mum’s damaged capacity stops her understanding what has happened to her, strangely it made it less painful for me to deal with. Alternatively if it is old mum putting on a brave face, trying to not look knowingly into the dark so be it. In the end either way Dementia will still be with us, I will have to help out where ever I can as required. The carer plays a vital role in supporting someone with Dementia, it is important they stay mentally and physically well, learn as much as they can, etc. But ultimately there are limits to what they can do, try and anticipate, most importantly accept they cannot defeat Dementia or make it go away. Carers are doomed to lose this battle, but we get to decide for ourselves how we deal with that certainty. It is one of the few things any carer has virtually total control of.

Perfect is not required, good enough will do. Please remember that as the future unfolds.

 

[Christie66]

Thank you @Whisperer for your wise words. Your own experience having trodden this path before me, and your insights are invaluable to me right now as I'm trying to put in place a way of coping with what lies ahead.

Yes, I am realising that I'm going through grief right now. Both anticipatory grief and grief at the losses of parts of Mum that have already occurred.

(On Friday mum had a fall (non-serious, she is healing well) so I informed her GP, and the GP said that bringing her in for a check over after the fall would be a good opportunity to take bloods, the first step in getting a diagnosis. So yesterday morning, I took mum to a 'safe clinic for the vulnerable' at her GP's surgery. As I took her in, the receptionist came out to show us the way to the doctor's room and said to me "You realise you won't be able to go in with her? We can only let one person it at once." I was a bit put out by this and said (Mum was right next to me) "It really would be better if I could go in too." The receptionist asked why. This was awkward, and I said, "It's hard to explain." At this point the receptionist twigged and silently mouthed to me the words - "Not all there?" I nodded in response to this (what else could I do?) and was let in to the appointment, but the words "Not all there" have stayed with me. Yes, pretty poor choice of words from the receptionist, and I can't be bothered to spend too much time being offended on Mum's behalf as I have much bigger stuff to deal with but I did realise that ironically, those blunt words in their literal form do hit the nail on the head. Parts of my mum have gone, some are indeed no longer there.)

So yes, I'm grieving, and I'm going to treat myself kindly accordingly. The difficult thing is striking a balance between your points 2) and 3). I think it is about accepting the emotional blows as they occur, avoiding denial, but also recognising losses and pain, and taking time to grieve and for self-care.

Can I ask if you have any tips for how to look after yourself while going through this? I am finding that I'm wanting to work on building up other parts of my life, if I can (it's difficult in lockdown). I am also finding that talking about this thing, both on here and to those around me is essential (and that's unusual for me as I'm quite quiet and introverted, I can easily cut myself off from others as a way of coping, but at the moment my instinct is that I need to connect with other people).

 

[Whisperer]

[

Can I ask if you have any tips for how to look after yourself while going through this? I am finding that I'm wanting to work on building up other parts of my life, if I can (it's difficult in lockdown). I am also finding that talking about this thing, both on here and to those around me is essential (and that's unusual for me as I'm quite quiet and introverted, I can easily cut myself off from others as a way of coping, but at the moment my instinct is that I need to connect with other people).
[/QUOTE]

hello Christie66

Sorry to hear about your mum’s fall and your experience at the GPs. Glad to hear you have others around you that you can talk to at this troubling time. I can give you some tips for where you are right now which might help. Just be aware two people can experience virtually the same events but draw very different lessons from them. Use what resonates disregard what does not.
1) Your experience at the GP was perhaps the first time your mum’s illness rubbed against the outside world. Be clear in your own mind people (medical or not) react to Dementia in different ways. Some friends and neighbours stop calling, I guess unable or unwilling to adapt to the change. Others will offer their profound advice, quite likely based on the back of a fag packet they once read. Others will rally round, try and help and like you early on learn by mistake. Welcome their help and support, socially isolate from the others.
2) Recognise from day one you have a limited pot of emotional and physical energy. You need to ensure it is topped up by keeping up interests and hobbies, taking time out from caring where you can, even if ten minutes making a drink. You must ensure it is not drained by fear and anxiety from yourself. Remember no two people with Dementia have the same journey. When you read threads here, any fact sheets you get from this site or elsewhere, etc, it is prudent to do so but not at the expense of endless what if thinking. Deal with issues that arise. They may not all arise, or be less bad for your mum than for someone else you read about.
3) Get help and advice from those with experience. Get a problem or query come to a forum like this. A safe environment full of people who have first hand experience. If anyone offers advice just gently ask what experience they are basing it on. Try and weed out the I met a bloke in the pub who said, or I once read an article that said, etc. Most likely well meaning but unlikely to be based on practical first hand experience. When seeking solutions remember perfection is not required, good enough or what works in the moment is best.
4) Contact the Alzheimer’s society help desk or Admiral Nurses Free phone service to discuss what happens at a Memory Clinic appointment. You will be with your mum offering support so best you have a good idea what to expect. Note down points you want to make. At the GP and at the Memory Clinic you are starting to put on the new suit, that of the carer and in some ways advocate. Get use to the fit, where does it need adjusting in terms of skills content.
5) Take the time now to really talk to yourself. The point you are at can be contradictory. Diagnosis, appointments, who to tell and how amongst family and friends, etc, on the one hand but at the same time mum chugging along. Have some internal chats now. How much caring are you happy to take on, who can I rely on and talk openly to, adjust your moral code so you accept love lies will happen one day and are not wrong, accept you will have fear and anxiety but that you will learn to live with that, that it is not weakness but wisdom to reach out for help and knowledge when required, that caring will throw up negative feelings but that does not make you a bad person, etc. If some of that does not make sense at present just remember the thought for future reference. Better a conversation now and on going rather than later when caring demands will most likely be more challenging.
6) ALWAYS ALWAYS remember you are part of the solution not the problem. The problem is Dementia, how others may react to it, problems in adult care,etc. You most likely will make mistakes, but you will learn and develop. Remember be gentle with yourself, cut the slack, measure against what is practical to achieve not some Florence Nightingale standard.

keep posting. You have found a useful aide in the carers armoury right here.

 

[LizzyC]

Hi everyone
Another newbie. I’m Liz, looking after my Mum who is 90. Like Christie, the sole carer during lockdown, staying over some nights and home some nights to do laundry and recoup my batteries. I’m the only communication with the rest of the family who keep telling me what I should be doing. Mum has mobility problems and passed out in the loo a week or so ago. I should have called an ambulance/ rung111/ got an out of hours GP appointment amongst other responses. Mum had the runs, was in a real state and just wanted to be in her own bed. If not for the virus and the fact that I’m meant to be shielded, maybe I would have rung for reinforcements But I did the kind thing. Mum gazes at the tv when she isn’t sleeping, says she doesn’t follow what they are saying, has no interest in past activities as she says she has no energy. She repeats herself continually and forgets what I tell her. I’ve lost my old Mum. She is highly resistant to the idea of a GP visit and frankly I’m frightened for myself going to an appointment. Family have suggested better painkillers or antidepressants but I’d be the one to manage side effects. Have these been useful? I’m going now to read the thread suggested to Christie on compassionate communication ( I think it was called). Bless you all x x