I'm new here,and thank you.

[secrets]

We are a gay couple and my partner D who was the most clever and intelligent man I ever knew has gradually ,over 5 years,succumbed to this dreadful disease.
Sometimes he is quite lucid and other times cannot remember a thing,and while I have always been able to do any amount of manual work,its all the paper work I cannot handle.
We have a business,and before all this, D managed finances/investments,and I find life extremely hard.
My commitment to D is total,and I will always care for him,not only is it my duty,but I wouldn't want it any other way.
D has always been a hoarder,as was his parents,and frankly it overwhelms me,especially as I dare not move a thing.For better or worse I have always been houseproud ,and it pains me to see everything on the slide.
My problem is I am a good actor,and friends have no idea of what I go through,as I have never lost my sense of humour and fun,but that again comes at a price in keeping up the pretence.
D's mobility is terrible,and he also is diabetic ,and suffers epileptic fits,and lately he often cant get to the loo in time,its a nightmare......and he also needs a hip replacement,which the doctor said is not bad enough yet,but according to a friend in the health service,that is a stock answer in these days of cuts,but I have sent a message to say we are prepared to go private.
Another thing now is that D stays in bed pretty well all day,and no matter how I cajole him,he wont get up.
Sorry this is such a rant,but I need to say these things.

 

[marionq]

Rant away. It's good to get it out even though little changes. You must get all the help you can with basics to give you the head space to deal with the rest. If you are in the UK you are entitled by law to an assessment for his needs and you as a carer. This frees up time if you get help and releases funds for Attendance Allowance, reduction of council tax and Carers Allowance .

Contact Social Services to be assessed and talk over your situation with CAB or Age UK or Alz Soc. They should be able to help with form filling and advice.

Good luck and welcome.

 

[canary]

Hello Secrets and welcome to Talking Point.

Your username says it all really, but one of the nice things about Talking Point is that you can tell it like it is and you wont get judged. In fact, you will probably get people posting to say they feel like that too!

You have so many things going on - you definitely need help. Eventually this disease is far too big for any of us to cope with by ourselves. Think about what you actually need help with. In my case it is the housework. OH is a hoarder too (and I think Im going that way as well LOL!) so I have to get rid of stuff when he doesnt see me - out of sight is definitely out of mind in his case and unless he sees me chucking stuff out he doesnt notice that its gone.

I will mention about the hip replacement. Please think very carefully about this. Anaesthetic is known to progress dementia in many cases. Also, would he be able to co-operate with the physio afterwards? It is never a good idea to put someone with dementia in for surgery unless it is really necessary.

Do have a look around the forum. There is much wisdom on here.

 

[Grannie G]

Hello secrets.

Welcome from me too.

It sounds as if you have got your hands full with running a business single handedly and being a primary carer at the same time.

If there is any way you can get some help in as marion suggested you can always tell your partner D the help is for you rather than him. You really do need it.

Even if you were truthful to friends and told them how it is, they would be unlikely to realise just how much full time caring takes out of you.

Off load here as much as you need to. There will always be someone to listen.

 

[Izzy]

Hi there and welcome from me too.

I'm sorry things are as they are but I'm glad you've found the forum. You'll always find a listening ear here. I've nothing useful to add, I just echo what others have said.

Perhaps you should be less of a good actor at times! Having said that I remember how hard it was for me to admit how bad things were in the early days. That's where this forum is such a blessing. You can share concerns, have a rant or ask questions. Just as you feel you need to.

 

[LynneMcV]

Hi Secrets and welcome to Talking Point

You are juggling a lot at the moment and, yes, it is exhausting when we endeavour to put on a facade for others which suggests we are coping, when in reality we are not.

We are here for you and ready to give support, understanding and advice based on our own experiences. There is nothing you need to hide or hold back. We chat, we laugh, we cry, we rant - this is a place to get things off your chest without being judged.

I can only support what others have said by way of seeking out some physical/practical help too, if you can. You will need some time to yourself, even if just for an hour or two each week - it will give you a chance to unwind and gather your thoughts and energy. A carer cannot care for someone if they are run into the ground through exhaustion and worries.

Keep posting

 

[Harrys daughter]

A big fat welcome secrets I 2nd everyone about and may I also throw in here have you got poa very important to protect you both x

Sent from my SM-G930F using Talking Point mobile app

 

[MrsMac73]

Hi
I'm new to the forum too...I did join last year but now at a stage where I feel I need help from other carers or just an opportunity to express my feelings. We moved our Mum from Manchester to come live with us in Belfast 3 years ago after concerns about her memory. She was subsequently diagnosed with Alzheimers and then this diagnosis was changed to Mixed Dementia after signs of a stroke showed on a Brain scan. She is 85 this year so it has been particularly challenging for her moving at that age as it has naturally effected her independence and she really doesn't socialise with anyone outside the family circle. The last 2 weeks I have found a change in her and she has become irritable, annoyed and at times angry with the whole situation and also refuses to accept that there is anything wrong and "why wouldn't I forget things? I am 85...." This ends up drawing me into the conversation around her memory as I try to explain why she is living with us...and the conversation goes around in circles. Before this disease my mother was so talented at everything, she made all our wedding cakes (1 sister and 3 brothers). She was a wonderful seamstress, she had gardens that the Chelsea flower show would be proud of.....I can handle the repetitiveness but hate how this disease has changed my mothers personality and robbed her of her independence. I am married with 2 young children. My husband is a great support as his own mother (RIP) also succumbed to the disease. We both run our own businesses and I have had to step back from mine to devote more time to caring for her. Thank you for the opportunity to share my situation...I hope I can help you sometime even just by listening xx

 

[secrets]

Thank you all so much.

Thank you all so much for your understanding and advice,it means a lot to me as its so easy to put on a brave face for the outside world,and dispite having friends around,i do feel very isolated at times with my stiff upper lip and not letting my defences down.
I am so glad to have been introduced to this forum as I now don't feel quite so alone....thank you.

 

[Nightgamer]

Welcome secrets.


I have no other advice to offer your, but wanted to show support for you as has many others, using a forum to rant, ask questions can be a big relief, there is usually someone here so no matter time of day, your sure to get response.

We are all here for you, united we stand, together we conquer.

 

[Kazsul]

Good for you secrets

Thank you all so much for your understanding and advice,it means a lot to me as its so easy to put on a brave face for the outside world,and dispite having friends around,i do feel very isolated at times with my stiff upper lip and not letting my defences down.
I am so glad to have been introduced to this forum as I now don't feel quite so alone....thank you.

I'm so pleased you decided to take up my suggestion to join this forum, if only to realise we are not going through this alone.

 

[Slugsta]

Hi and Welcome to TP. I am glad you have joined us - although sorry that you have need of us!

I echo the suggestions to get help with as much as you can. Whether that is help with the housework, paperwork, personal care for your partner, anything and everything that you need.

Some people feel that asking for help is somehow a sign of 'failure' but many people here have found that it is the only thing that has enabled them to carry on caring for their loved one.

I am going to 'chip in' about the hip surgery (please feel free to ignore any advice that doesn't suit yopu or your situation!). Do you think your partner stays in bed because of hip pain or the dementia? If it is the dementia, then please think hard about subjecting him to an anaesthetic that might well worsen the dementia symptoms without bring about a big change in mobility.