My mums declining health - please help me I need some support

[oustedbymymate]

Hello

New to all this and so just need some support and help. Sorry for the outpouring.

I don't want to be too outing but I'll try and explain as best I can.

Mum is under 65 and over 60. Has always been a bit on the 'depressive' side. However recently it's become unmanageable along with a lot of other issues and I need help as to what to do.

She 'cares' for one of her parents and that is obviously a strain as it's been going on a number of years however over the last year she does less and less care and just says she doesn't want to go and wishes that her parent would just die as 'it would be easier' we pay for daily additionally care 3 times a day to call at grandparent flat which is in assisted living. DM refuses to acknowledge that she can step back and we can put more care into place but is insistent on 'controlling' everything but then doesn't want to do anything about it.

DM has depression. We have tried to get her to access services such as IAPT for counselling and she won't. She says it's a waste of time. We have asked her to see GP who prescribed 25mg of sertaline. DM starts and stops medication regularly as 'it's not doing anything' but she doesn't give them change to actually work. Nor has she been back to gp to say it's not working.

Then more recently more things have started to happen. She has muscle weakness. Can't open jars, lift things (she dropped my 1 year old 6 months ago - luckily I was right next to her and caught him but it shook me up and she seemed non plussed about it). She has poor mobility.

Her writing has deteriorated and is really shakey now.

She cannot hear. We have asked her repeatedly to go and get it sorted and even go private as it's just so isolating not being able to hear. She says she is sorted it. It's been going on for over 8 months. Doesn't wear the hearing aids she should.

Cannot follow a conversation. Associated with hearing I'm 90% sure but then it's also seem a lack of understanding or concentration.

Struggles to remember basic words

Forgets the names of the children in our family.

Had a strange walking gait with a foot drop

Doesn't take pride in appearance anymore. Isn't smelly or dirty but rarely wears make up. Doesn't get hair done and it's all limp and lifeless.

Recently has suffered with incontinence but not just a minor leak. A full flood. And then it happened in public and she didn't seem overly upset about it. Just a bit 'oh dear'. I was horrified and my mum of times before would have been mortified. Hasn't taught medical advice for this despite going on for over five weeks.

Doesn't earn well particularly. Is a little underweight.

Lies about what she's been doing.

She is literally a husk of the woman I knew.

She seems to have no joy. No purpose in life.

She doesn't exercise. At all. Doesn't really leave the house besides the obligatory visit to her parent.

She used to bake, read, knit

I have tried so much to help her. Things I have offered and she's declined;
Go to doctors with her
Do online food shop to be delivered at her house
Meal plan
Booking things like swimming for her
Finding a knit and natter club
Finding a local social club for her.
Finding help to support grandparent.

I don't know what to do now and where to turn. I really need help. Who do I contact to help me? How do I get her infront of a GP
With me so that I can be open and honest. About what's going on.

I feel like there must be something else at play. Alzheimer's? Dementia?

I have a young family of my own, work full time and a supportive DH but I just don't know what to do or how to help?!

My dad is younger than mum and still working full time. Mum retired over 5 years ago and took retirement to 'spend time with grandkids' which she doesn't do. Dad is great in lots of way but shit with this and is just burying his head in the sand. And says oh yes I know but doing nothing proactive.

I'm sorry about the essay but I need to write it all down somewhere and try and get some help from somewhere?! Thank you if you've managed to read through all that.

If your parents can afford it, your mum could see a private GP for a second opinion, and ask about a neurology referral. I think that is probably what I would do in your position.

I would normally wait and see what effect the sertraline has, but I just cannot see how some of those symptoms could be due to depression.

@TheShellBeach I'm not sure re private. We don't have loads of money but can look into it.

My dad...is burying his head in the sand. I feel the relationship (if you can call it that) has been indifferent towards each other for some time now sadly. I don't know how to deal with that and I have enough on right now. He is looking to me to take the lead. Which I am and I'm trying. Alongside working full time and raising two small children and maintaining my relationship

I had a private assessment by a neurologist because of tremor about 20 months ago ( fortunately nothing nasty diagnosed).

What I did was look at my local " very big" NHS hospital and see who the neurology consultants were and by googling check which ones also offered private consultations. I chose someone who's specialisations seemed relevant.

Then I booked through the private hospital ( very easy) to see him. It cost about £250 iirc.

I was able to have all the necessary scans on the NHS.

You are stuck between a rock and a hard place. I am so sorry because it's hard.
My Dad has recently become extremely impaired and I've had to push my Mum to "get an appointment on the sly". It's taken her about 6 months to accept it but something has to be done.
Solidarity in these hard moments.

I would add we are north M25 commuter belt and over a years wait for a neurologist so had to go private with GP referral.

I keep trying to get mine to go on our Benenden Health policy, in case of stuff like this. It makes sense, it is the same price £15 a month no matter what age, pre-existing conditions etc, but they are really funny about it. I'm not sure why.

Hello I'm back with an update.

We're 4 weeks into 100mg daily sertaline and seen zero improvements. She's now not really eating either. Her speech is shocking. Cant remember basic words. Cannot follow a conversation. Is very confused a lot of the time. Mobility is poor too. Incontinence has also continued.

Review with dr this coming week. I am convinced is more something like MS. As well as depression. Going to push hard with dr as this is just awful.

MS would be unlikely to affect memory, word recognition and retention. Nor would early stage Parkinsons. Your mum needs a referral to a neurologist quickly.

So sorry, it sounds very like my mum who has early onset frontotemporal dementia (diagnosed at a similar age to your mum)

It does sound like dementia.

Another update. We had a review yesterday with same dr.

He didn't seem to know what he had said previously. Was quite dismissive and I found it really hard. I said about her walking and unbalanced and foot drop. He said 'looks fine to me' she was sat in a chair and had walked approx 4 steps into his room.

Mum said she's feeling no different in the antidepressants. I asked what then next options were and he said well I'll just see you in three months. I had to push hard re the other symptoms she has and I said I couldn't see how they were all linked to depression and that she can't go on like this. He has reluctantly agreed to a nurology referral. Which I feel at least we can rule anything else out. But it was really hard work and I I didn't feel listened to at all.

I'm so so sad about what is happening to my mum. I don't know where to turn for help or support.

Do we look at going private. I don't know how that works or costs involved etc.

Anyone with any advice would be greatly received!

Do you know how long the wait is for neurology appointments? That might help you decide what to do?

If you go on the website of whatever private hospital is near you, you'll see what specialisms they cover. You can then ring or email to get some prices.

The GP sounds hopeless. I once had one like that, who barely even glanced at the patient and seemed completely uninterested. If you need to revisit, is there another GP in the practice you could request? Did he give an idea of how long for the neurology referral?

You could consider seeing a private GP. It could open the door to getting the right type of referral quicker. The consultation with the GP shouldn't cost too much and you could then enquire about further potential costs. Depending on what s/he says you might decide to wait for the NHS neurology referral.

OP that GP sounds bloody useless. Can you see a different one in the same practice if private isn’t an option? Does your surgery run a memory clinic you could ask for a referral to? I really feel for you, I hope you get some support soon.

Go back to the GP and see a different one. Write a list of symptoms that you are concerned about. Keep pushing.

Did he do a mini mental test? It's a cognitive test that takes minutes to administer. I would anticipate your mum would score poorly . I am in Ireland and a Public Health Nurse/ Community OT can carry out these assessments to and also Functional Tests. Can you contact Community Care or get a referral through GP? You have my sympathies. It sounds a very difficult situation for you.

I'm a layperson, but the decision to treat your DM's many and varied symptoms as simply 'depression' and up her dose of sertraline makes no sense at all. Foot drop, poor memory, incontinence + loss of inhibition, poor coordination, confusion - those are all serious symptoms of something, but not of depression. Was she checked for a UTI? That can cause urinary incontinence and confusion.

So since GP No. 1 was useless, you really need a second opinion. I would ring up reception at the GP's and explain that you would like a second opinion and ask if any of the partners specialise in the elderly. If the answer is 'No' then ask the receptionist who they would recommend that you see. Then ask that different GP what the referral time is for neurology. Many waiting lists on the NHS are months long, so you'll have to balance that wait with the cost of going private. But your DM clearly needs to be properly examined, she may well need to have urine and blood tests to rule out infections, etc, and I would not take no for an answer. The first GP fobbed you off, which is unacceptable.

As for going private, you can research online and then just ring the doctor's private clinic phone number and book an appointment with the receptionist. Wait times are usually days or weeks rather than months. But Google something like 'private neurologists + Birmingham' or wherever your DM lives.

I’m sorry, this sounds so stressful. I thought dementia too I’m afraid.
Unfortunately, in my experience, GPs are not interested in diagnosing dementia and will deny as long as possible that anything is wrong. Why on earth would family take someone to the GP with concerns if all was OK? Makes me so angry.
I think if possible you should push for a referral to the memory clinic, who are also completely useless in my experience, but you might at least get a diagnosis.
Agree re the PoAs - get them sorted as a priority. Your grandparent’s and your mum’s (everyone should have them!) I think your grandparent definitely needs care from a different source, or a care home if needed. Don’t be afraid of care homes they can be amazing places.

One more point on possibly going private: if you want to do this it is best to ask the GP (the next one you see) to recommend someone. Then you can Google that person and their charges may be visible if they have a website for their private practice, but if not you can just call up and ask. A first consultation with a private practitioner will probably be somewhere in the ballpark of £100-300.

Update.

I'm finding this so bloody hard. Juggling work (who aren't supportive) two small kids. Living 45 min (each way) away. It's just so much.

I don't really feel like mum WANTS to get better. I've suggested counselling and she said she can't (wont) pay for it. It's 6 month waiting list so gp says.

I've offered to help her meal plan to help her get decent meals or order things like Wiltshire farm foods. She's refused.

I helped her plan out her week so she knew what she was doing. She got all flustered and said she didn't want to plan something each week.

She's refusing to see my nan which breaks my heart as I can't get to see my nana. She is going once a week. That's it. I've said she doesn't need to do anything just go for a cup of tea. But no.

She was referred to the incontinence clinic and then lied to the woman. She told her that she drank 3lts of water a day. She doesn't. I've rarely seen her drink more than a glass of water a day she's notoriously bad for NOT drinking. So the woman just told her to drink less. So that problem isn't sorted.

I'm fucking exhausted with it all.

There's a newish legal right to a week of carers' leave per year which might be useful? It's unpaid.

Unfortunately I'm really struggling money wise. It's extremely tight. I can't afford unpaid leave. We paid over £900 a month just in nursery fees for 4 days. Then wrap around for my school aged child £200 w month. That's 70% of my salary gone already.

@oustedbymymate you know you can request a second opinion by a different Dr. at the GP practise?some of her symptoms could be explained by the self neglect resulting from depression or pseudo-dementia but it’s really important to exclude serious pathologies. personality changes due to organic disease can get missed when stuff gets put down to depression ,including eg, brain tumour, it’s not unusual for brain tumours or other pathologies to be missed or diagnosed late.

I was going to post exactly the same as @Namecbbc That GP really let you down that day, another GP on another day might be willing to bring some more insight to bear. And of course you somehow need to communicate that she is misrepresenting her situation as she did with the continence nurse

It certainly sounds as though something is badly amiss.
You say your dad is indifferent/ passive.. Horrible thing for me to suggest so forgive me but are you sure he isn't abusing her?

.

That aside, try to get your dad to step up. Im surprised you are not more angry with him. Ask him what they've eaten has she bathed etc..Dont let him put it all on you.

Most importantly on that note OP, look after yourself. Sadly it seems quite possible that there will be no quick and easy resolution to this. You must preserve your health, strength and patience.

I'm sad to read that, OP. It struck me today that it's ok to let our parents reap what they have sown, that it's not our job/mission/duty to make their old age ok for them. My DM is cognisant of the decisions she's making and I'm not going to fix or improve them for her just because she's old. Sounds to me like you're a kind and loving soul. Don't let that drag you to a bad, overloaded place