: Finding it hard to cope, thoughts appreciated

Pensive

New member
Feb 11, 2018
8
0
Hello everyone you haven't taken my thread off course, I have to admit that I am having a bit of trouble navigating around as well, but can see that no-one minds sending you in the right direction. Thanks everyone for your great suggestions and care, which I am going to implement. Somehow getting in touch and seeing there is help and genuine care out there has done me the world of good, so much so I it has made me look at myself and made me give myself a good talking to. Today I have been a lot more understanding towards my husband, and we have had a much better day, mind you it has helped that he has been watching the world cup, the reality of which has made me grateful that he is still able to enjoy it. It's time to appreciate these times for as long as we can.
 

member74974

Registered User
Jun 30, 2018
41
0
I’m sure you didn’t need to give yourself a good talking to. You’ve had a lot on your plate. And I’m sorry for the deviation. I didn’t mean to. I’m sure you found the idea to write in advance useful to.
Glad it was a better day.
 

Blondee

Registered User
May 12, 2018
105
0
Hello @Pensive
I’ve just caught up with your message and I just wanted to say that you’ve had so much to deal with no wonder you are stressed.
I agree with the advice to keep a note of everything that happens. It all helps to build, a picture - even finding a teabag in the toaster which I found as a result of mum trying to make tea!
As for feelings of betrayal - I won’t lie- it goes with the territory. You need to keep reminding yourself that you are doing this to make sure you get the best care possible. It’s not easy but everyone on here knows that and many have been through this so keep posting. You will get endless support.
 

TeddyBear77

Registered User
Aug 29, 2018
28
0
My OH has an annual appointment with a consultant in the new year. I’m keeping a note of things that happen and the dates in the note section on my mobile. I don’t want to say too much in front of him, he can’t remember incidents and would be upset if he heard about them, I think. I looked up MCI after reading your post. It could well be his problem. If I feel I can’t say things at the next appointment, I intend to write to the consultant, with the diary. Or I may take a sheet with it in my bag, and give it to him, if there’s an opportunity. Sometimes it’s easier to do things in writing, people can think one is being over emotional, when actually, all one is doing is reacting to a difficult situation.
My heart goes out to you. Having been a Carer so many times, and now this.....

Yes that’s the best thing our doctor took no notice until I produced a list of things that had happened. Then he referred us to a memory clinic followed by an MRI and Year on he’s been discharged as it’s not dementia only MCI. So the process starts again.
Keep on at them it’s the only way and keep notes. Good luck
 

Pensive

New member
Feb 11, 2018
8
0
I don't think this is the place to make my post, but I just can't find out how to make a post on the Open Forum.

It is getting towards a year since my first and only post, after my husband was diagnosed with MCI, and as with everyone on here things do not get any better!

At the moment the GP practice just don't seem to get it that ringing my husband to give him an appointment is a waste of time. He is now 75 so was telephoned with an appointment for his yearly review. I was out caring for my daughter so he forgot to inform me of his appointment so it was missed. He remembered his appointment when I was invited for my yearly review, so I telephoned and apologised and asked if something could be done to alert the staff and GPs about his condition and thereby ask for me. I was told no because of patient confidentiality. He now has been given an emergency appointment at the local hospital as blood has been found in his urine. Information received from hospital explained that they would ring within a couple of days and give him an appointment. I decided to ring them myself and was told that they couldn't speak to me, a bit upset I explained the situation, the lady was extremely understanding and gave me the two appointments, and said that the GPs should have put this on my husbands referral letter, which they hadn't. Can anyone give me any advice as to how I could get them to deal with me as well as my husband.

Life is hard at the age of 73 with having my daughter and my husband to care for. I mentioned to my GP that my husband's condition was deteriorating and that as MCI is not considered dementia I am not entitled to any assistance, she wasn't really interested and said it was up to me. Do I write to them detailing how my husband is deteriorating in the hope that they will do something.

I would be grateful for any advice.
 

Helly68

Registered User
Mar 12, 2018
1,685
0
Pensive, you have my sympathies, these things are never easy.
I am sure someone will have links to alzheimers resources here that may be useful. The sad fact is that even with a dementia diagnosis, there is very little help available unless you fight for it or have very active voluntary sector organisations where you live.
You can, however, ask for a carers assessment from social services - designed to support you in your caring role and this may help to find sources of support. Do you have Power of Attorney? If you get this you may find it easier to get others to copy you into correspondence and contact you rather than your husband. The GP practice certainly should have made a note of the MCI.
I am sure others will have useful advice. As our loved ones condition progresses, people have various choices, including having carers visit the home and also care homes. My mother has lived very happily in a care home for some time, though this isn't for everyone.
 

Guzelle

Registered User
Aug 27, 2016
426
0
Sheffield
My gp always contact me on my mobile for me and my husband, as he is deaf and has dementia and can’t remember how to use a phone properly. So surely yours can do that aswell. You have my sympathies because it is so hard getting any help I have found everyone is very sympathetic but no one offers any help with caring. I have been in contact with social care, GP, as my husband can be violent she gave me the number for a refuge. As if I can leave him on his own!
 

Dosey

Registered User
Nov 27, 2017
96
0
Pensive I am so sorry that you are having difficulty.
Can you go in with your husband at his next appointment and get him to give permission to discuss all his health needs with you.
I cared for my husband for 7 years with Alzheimer's ( now in CH since last month) . We only got guardianship through the court in march 19 . His GP, Doctor at dementia clinic, doctor at Urology and all other professionals have dealt with me regarding all aspects of his wellbeing.
Even before he lost capacity I made all decisions and attended all appointments.
We only went for quardianship as we were going for care home and needed things to be legal.
If your husband still has capacity to consent, then he can have this put on his file. Ideally POA for welfare would be your best option, less time consuming than guardianship once a person loses capacity to consent. Unfortunately my husband would not consider this when first diagnosed as he thought he was fine.
Good luck hope you get this sorted soon.
Rose
 

Bunpoots

Volunteer Host
Apr 1, 2016
7,342
0
Nottinghamshire
I also had my dad's permission for the GP to phone me to make/remind about appointments. It may take a little lateral thinking to come up with an excuse as to why the doctor should phone you. I used the fact that dad had a terrible memory
(which he accepted) or that he was a bit deaf and it was easier for me to hear what they were saying.

Once I had dad's permission it was easier - although I did have to remind the staff at the surgery that they should be phoning me sometimes!!
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
Yes my dad's GP has always allowed me to go to dad's appointments and he always phones me about anything. It would be pointless phoning dad.

Hospital consultants are the same, I always go in with dad.

The only time I was not allowed in with dad was when he was going for his endoscopy but to be fair they came and got me after five minutes because dad told them he had eaten breakfast. He hadn't of course.

It's just common sense or perhaps I have just struck lucky with all of dad's doctors.
 

Philbo

Registered User
Feb 28, 2017
853
0
Kent
Hi @Pensive

I took a certified copy of my wife's Health and Welfare LPA to our GP practice, which they scanned in whilst I waited. Suitable "warnings" were put on both our records.

Phil
 

Pensive

New member
Feb 11, 2018
8
0
I want to thank you all for your usual gentle kind advice. I knew I would get the help I needed.

Today, I have not long returned from caring for my daughter, and we had a tense and upsetting time (lots of crying) today. She said she should come and live with us. How awful for a young women (of 40 with no significant other or children) to have to give up her home because her aged mother can no longer cope with caring for two people at once. My daughter and I have privately been diagnosed with Addison's Disease (no help at all forthcoming from our different NHS Practices. Because the NHS does not accept private laboratory tests, no help is forthcoming. I buy all our medication from abroad which is terrifying in case we can no longer obtain this medication, the scenario is probable death. Stress all the way. I don't care about myself but I have to try and keep reasonably healthy to look after them both.

My husband's condition has been a slow burner (over 12 years) knowing that his problems were more than likely genetic as so far out of 8 brothers and sisters (4 boys and 4 girls) 7 have been diagnosed or have died with some kind of Dementia - so far the youngest, aged 72 is the only one who has so far not succumbed.

Thankfully about a year ago because I knew we had a big problem my husband and I had our Wills done, an LPA for Property and Financial Affairs cover drawn up. (not cheap). As suggested I will copy these legal documents with a covering letter to our GP asking politely if they could ensure that s "warning" regarding this information is placed on our files.

Thanks guys your caring and information is very much appreciated.
 

Grumps82

New member
Apr 25, 2019
1
0
To Pensive, It strikes me you are a saint. You have put my problems in the correct perspective and they now seem trivial compared to yours. To be fair I have had very different experience with my GP who has been helpful and sympathetic from the start I have nothing but admiration for you and your strength
Incidentally the version I know is
I thought my feet were very sore till I met a man with no feet at all
It scans better than the other version
Whilst we are being literary
And that inverted bowl we call the sky
Where under crawling cooped
We live and die
Raise not thy hands to it for help
It rolls impotently as thou or I
This may not be the place for such asides but they may amuse some people
Grumps82
 

Philbo

Registered User
Feb 28, 2017
853
0
Kent
Hi @Pensive

I was diagnosed with Addison's Disease in 2006. As a relatively rare life-threatening condition, it is quite common for people to struggle to get a diagnosis. There is still a lack of awareness amongst the medical profession and it can take many months for the signs and symptoms to appear, as the adrenal glands slowly stop producing the hormones vital for sustaining your body.
It took me almost 18 months and was only diagnosed when I collapsed and ended up in A&E.

Has your GP referred you to an endocrinologist? If not, I would insist they do, which would give you the opportunity to show them your private lab results.

Adrenal failure most certainly does result in death, so whilst not wishing to alarm you, you cannot afford to go on without the full support of the NHS. Once diagnosed with AD, you and your daughter would be entitled to free prescriptions, including the supply of injectable hydrocortisone, for use in an adrenal crisis.

A lot of information is available from the Addison's Disease Self Help Group (ADSHG), a charitable organisation.

Please, please, please keep insisting that your GP makes an urgent referral.

Good luck.
Phil
 

Pensive

New member
Feb 11, 2018
8
0
Hi @Pensive

I was diagnosed with Addison's Disease in 2006. As a relatively rare life-threatening condition, it is quite common for people to struggle to get a diagnosis. There is still a lack of awareness amongst the medical profession and it can take many months for the signs and symptoms to appear, as the adrenal glands slowly stop producing the hormones vital for sustaining your body.
It took me almost 18 months and was only diagnosed when I collapsed and ended up in A&E.

Has your GP referred you to an endocrinologist? If not, I would insist they do, which would give you the opportunity to show them your private lab results.

Adrenal failure most certainly does result in death, so whilst not wishing to alarm you, you cannot afford to go on without the full support of the NHS. Once diagnosed with AD, you and your daughter would be entitled to free prescriptions, including the supply of injectable hydrocortisone, for use in an adrenal crisis.

A lot of information is available from the Addison's Disease Self Help Group (ADSHG), a charitable organisation.

Please, please, please keep insisting that your GP makes an urgent referral.

Good luck.
Phil
 

Pensive

New member
Feb 11, 2018
8
0
Hello Phil Many thanks for taking time out to give me some advice.

I did see an endocrinologist but they were very annoyed that I was self-medicating, even though they were told that I had been poorly for quite some time and all that the GPs had offered was antidepressants, and that I was caring for my daughter and husband.

The endocrinologist would not accept my 24 hour saliva labs tests, (was told no UK endocrinologist would accept these tests) and the only offer they made me was to have the false positive Synacthen test. I politely refused to have this test as I was told I would have to come off the steroids even though they knew I would probably become very ill, especially as I had been taking them for two years and that my body now entirely relies on them as my cortisol levels will have been completely suppressed.

Recently I did start reducing my dosage on instructions from my GP but not surprising I became very ill, which is no good for anyone as I was unable to take care of my husband and daughter. I have resumed my normal dosage of 5mcg morning 2.5 lunch time and 2.5 early evening. I was told that this dosage was far too high. As you say this condition is life-threatening which is hard to live with.

I did join the self-help group who, like you, told me to see an endocrinologist, but were unable to help me.

However, I was so sorry to learn that you did not get any help until you actually had an Addison's crisis, which must have been very frightening for you - I hope you are now back to full health.
 

Philbo

Registered User
Feb 28, 2017
853
0
Kent
@Pensive

Although there are factors such as age, gender, weight etc that determine hydrocortisone dosage, the average seems to be 10-5-5 (mg) daily. Also, if you are primary AD, then you'd also need 100mcg (although some, like myself, only take 50mcg) of fludrocortisone, daily.

Maybe another approach could be to push for a CT scan? My scan showed my adrenals to be a bit like pickled walnuts.:D

Sorry for this diversion to the original post - just trying to help a fellow sufferer.:)
 

Pensive

New member
Feb 11, 2018
8
0
My daughter came to live with us permanently about two months ago. It was one of my caring days to clean, change beds get washing etc, but that never happened, she just broke down when I opened her door (she is usually in bed) and said mum I just can't cope anymore, can I come home and live with you. I just packed her a bag, put her in the car and took her home. Since then I have been trying to get rid of a lot of my stuff (sometimes not a bad thing when you are as old as me) in an effort to try and incorporate some of her bits of furniture she loves and other stuff. I have been desperately trying to get her house ready for sale, my daughter tries to help but her condition precludes her from doing a lot, she is very ill afterwards but insists she has to try and help me. We are like two old crocks the next day.

My daughter quickly found, that being around her dad all the time, that he was really deteriorating fast. So eventually we contacted our GP and asked for another referral at the Memory Clinic. The Psychiatric nurse came out, again, today to reassess whether he had deteriorated or not.

Today was awful, as my husband doesn't believe he has a problem, and when our daughter replied to a question do you get frustrated and upset about things he said no. Our daughter replied, dad you have a vile temper, he was incredulous, it was not a nice experience to see his face when I told her a lot of the problems we are having with him, and how his capacity for not being able to carry out tasks and that he was depressed even though he had said he was not (he has been depressed for about l5 years now) and his short term memory. He told them he was still driving and had no problems, I had to interject that I will not longer allow him to drive any distance, I do all the driving, but he pops round to the Supermarket around the corner in the car was terrible, there was an awful lot more but I was desperate. I still think it is very wrong and rather cruel that family have to do this in front of a close family member My daughter and I had prepared what became a very long list (almost three pages long) regarding his deterioration, and managed to give this to her when my husband had briefly left the room.

Yet again they did the same tick box exercises of drawing a clock remembering an address and finishing off a couple of grammatical sentences etc. We weren't present and in another room also filled in (again) the same tick box form as I had a year ago. My husband was having a good day, which are becoming rarer and rarer and apparently was only 2 points lower in this test. I was told that he would probably not be asked to the Memory Clinic for further tests but she would suggest he have another MRI scan.

When she asked was I OK with this I just broke down and cried and cried. She asked had the Carers charity been in touch and I said yes but they couldn't do a lot as Mild Cognitive impairment was not see as Dementia and I can get no help at all. I have been in a terrible state, and wonder if anyone has had MCI turned around, and how did they do it.

As you can see I am really feeling sorry for myself, but any advice would be greatfully appreciated.
 

jenniferjean

Registered User
Apr 2, 2016
925
0
Basingstoke, Hampshire
I have been in a terrible state, and wonder if anyone has had MCI turned around, and how did they do it.

As you can see I am really feeling sorry for myself, but any advice would be greatfully appreciated.
When my husband attended the memory clinic and was seeing the nurse, they had him down as having MCI for a long time. I questioned this at one point and was told only the consultant could change that diagnosis. But I was unhappy with this as he was not even seeing the consultant. So I queried it with my doctor and she told me that as far as she was concerned, based on the reports she had received, he had dementia. That was when we lived in Wales. When we moved to England, in March last year, our new doctor told me that from his notes she was convinced he had Alzheimers and she saw no reason to refer him to a memory clinic now.
 

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