I am really sorry that you are going through such a rough time. Perhaps some online therapy and online meet up groups could give you some much needed social respite whilst still allowing you to be close at home with your parents.
No real update, dad sleeping times have stabilised back to ānormalā for now so that takes some pressure off.
Had a call from the social work team about my dad, basically they will only send carers if there are critical care needs and he wonāt consent to help with washing or dressing and they wont come out to organise his breakfast. Also said since i am here and already doing it for my mum it wouldnāt be āthat much moreā to also continue with him. Ended up losing the head with her on the phone for talking over me and assuming things about my mums care. She said the carers for my mum coming in to do her breakfast in the morning could also take care of it for my dadā¦ it takes about 40 minutes to get my mum her breakfast as she has to be spoon-fed - i asked her are they going to do that? noā¦ So how the hell are they going to be able to help my dad as well when they cannot even help her. I am so so so sick of people talking over me and assuming stuff before asking. So pretty much nothing they can do unless i leave and even then i doubt they would bother themselves.
He is also saying he is not going to go to the memory clinic appointment when it comes in, i donāt even care at this point. Every single appointment or service i have just hit a wall with them telling me there is nothing they can do.
He has been referred to the occupational therapist, got the letter in - 3 year waiting list.
Looked into the benefits thing and i would need to get the POA to do anything in regards to that, but because mum is over 75 the amount she would get is minimal and not really worth the hassle. Also from reading the POA costs money to get and she doesnāt have any property or money so looking into an alternative for other reasons such as healthcare control for my mum.
Mums second referral got lostā¦ so still waiting on anything from that.
I contacted the care coordinator for Western Health about having a carers assessment and the issues i was having with it. I asked her very specific questions in an email, got back to me after about 2 weeks asking me to call herā¦ sorry i donāt trust anything not in writing and you canāt even tell me the info iāve asked for already. Turns out i need to wait until they assign a social worker to my mum before i can get one apparently.
I saw the mental health worker at my GP practice - i got a piece of paper with a youtube channel that has videos about OCD in relation to some tendencies i have. Nothing else apart from that, therapist referrals would take years he said so didnāt even bother.
GP said they would make a home call for my mum last week just to see how she is getting on because of an ongoing cough she has. GP called on tuesday, i missed the call and she left a voicemail to call her back but no direct number. Called the surgery who said they would pass on a message to let her know i calledā¦ havenāt heard a thing since. They apparently had cancelled all routine services last week too.
Feels like no one is going to do anything until i get taken out of here in a box.
Hi Jen. Well done for opening up about your struggles.
Until recently, I have taken on the responsibility of my Mum alone, albeit as a part time carer. It took a meltdown of my relationship with Mum for me to discuss my troubles with friends, family and professionals. It has made a big difference to how I feel and it also has given me some support. I had Mums GP visit her last week to make sure he was aware of mums cognitive issues (he did not tell her I had requested the visit). I contacted my GP who gave me sleeping tablets to use when I really need them plus info on how I could get support. From that I intended a course ācaring for dementia carersā from which I learnt so much about how to look after myself and how to be a better carer. The company that runs the course is called Promas. They are in Cornwall, but do online courses, which you may find useful. I took a week of work to process all that info and to reset.
So, please look after yourself and get any help you can. My relationship with Mum is improving because I accepted support. I wish you all the best.
2 Likes
im trying to get help, it doesnāt exist. i dont WANT to be my dads carer.
1 Like
@Jen_2105 No one can be made to care.
Jen, do you live with your parents?
You have every right to a break, you sound frazzled. One day, when mum was in hospital, Iād been at her house trying to get it ready for yet another discharge, when a voice came in my head saying āI just canāt do this any moreā. Iād had a really tough 15 years. You sound the same.
They are wrongly assuming that you can be manipulated into staying.
So write to them say you are going on holiday for 2 weeks and will not be able to care, and will not have your phone with you. They must arrange appropriate care for your parents.
On the subject of benefits, you donāt need POA, ask DWP to send you an application form to become their APPOINTEE. Itās simple to do this, assuming you want to? Then you open an account in YOUR name to be used solely for their benefits (or maybe one each?)
Yes i do.
My father is refusing any and all help and even refusing to attend the memory clinic appointment. Social services just say unless he gives consent there is nothing they can do.
Holiday? lol iām in debt and havenāt been out of my overdraft for 3 years now and havenāt got a jobā¦
Thought i would give an update on this.
On 24th June myself and my nephew and my brother demanded my dad go to hospital. He went in. 3 days in A&E. They did some CT scans on his head, we were told different things at first - bleeding clot, clot etc. There was something in his brain basically that shouldnāt be there.. but they needed to do an MRI to know more. Personally, i suspect it was some sort of acoustic neuroma or some other type of growth that caused a lot of the neurological symptoms he was experiencing, as they were then focused on trying to get imaging of his auditory area. He developed tinnitus years ago but investigations never went anywhere. There was a problem when they tried to examine his ears and he was meant to get a scan then. He was admitted to hospital and was still struggling to eat and when they weighed him he was 6 stone.
On the 29th June I tested positive for covid. My first time getting it so I was unable to visit him from that point on. I did get to visit before that, held his hand, told him I loved him. He tried to say it back but couldnāt but I saw the tears welling up in his eyes. I told him I know he loves me too, he didnāt need to say it. He had an MRI scheduled for the 1st July. He never made it that far and died early that morning. My brother and my uncle were able to go to the hospital but sadly didnāt make it in time before he passed. Causes of death - Frailty, severe emphysema, hospital-acquired aspiration pneumonia.
During all this I have been trying to get help with my mum - some carers to change and/or feed her to stop myself from passing on covid to her. After a LOT of work I managed to get her a respite stay at a nursing home arranged on the 1st July. I had to organise an ambulance transport myself. They were pulling up outside and my mum takes a downturn. Her temperature shot up, she vomited. Now I need to call an ambulance for her to take her to hospital. That is arranged and again back up to the hospital, back to A&E. She caught covid from me.
Again another 3 day stay in A&E. I stayed with her the entire time, leaving just to attend my fathers funeral on the 3rd July, I missed his wake to be with my mum. I was the only one who knew anything about my mums condition so i was the main point of contact for the doctors. I was said about this but consoled myself knowing it was were my father would have wanted me to be. My mum was in a state of hypoactive delirium during all this time. They were not giving her anti-virals for the covid as the doctor stated āāthey donāt really workāā. I didnāt know the NHS paid for treatments that donāt work, but, whateverā¦
On the evening of the 3rd July she got a bed in a private room on a ward. The same ward my father was in. Every doctor I spoke to kept tip-toeing around the issue and what was wrong. They were just interested in knowing about her usual alertness level and how this differed. I could feel they were pushing for a palliative care approach if no improvement happened but none of them directly said it, which annoyed me. She was comfortable, sleeping and in a very nice and quiet room and her stats were stable. So I went home to shower/eat and a night of sleep in a bed rather than a chair.
On the morning of the 4th July at 5am (why does this stuff always happen during the night/very early morning) I got the call. My mums oxygen had dropped and they want us to come in. I call my brother and we go to the hospital, up to the ward. We are called into a room to speak to a doctor first and again like all the other doctors, they ask us what we know before they tell us anything. I explained what I understood - she is unwell, they are looking for improvements to happen and her stats were stable and bloodwork was fine yesterday evening. Thankfully this doctor was straightforward and frank and told us, āi think your mother is actively dyingā.
It was a shock to hear, I thought no - she must have it wrong and she just isnāt used to how lethargic and non responsive my mum is when she isnāt well. I asked can I go and see her. My brother isnāt coping well, it is the same room he was in just a few mornings previously to talk about my dad dying. On the way to my mums room I asked the nurses at the station if they could keep an eye on my brother, I thought he was going to faint or something.
When I went to the room and looked through the window of the door I knew immediately my mum was dying. She was a greyish yellow colour like she had jaundice, even though she didnāt. Two nurses were sat either side of her holding her hand, her eyes were open just staring ahead blankly and she was wearing an oxygen mask. My brother and I went in and the nurses left. I sat beside her and held her hand and it was stone cold, iāve been to many wakes and touched a lot of dead people and it felt like that but without the hardness. Just the cold feeling that stays in your fingers for what seems like forever afterward. One thing I also remember is just how soft her skin was, softer than I ever felt it. My brother stood at the end of the bed for a few minutes before leaving.
When it was just me and my mum I did the usual like telling her I loved her and all the while she just kept staring ahead and not responding but I kept talking anyway. Told her it was okay to go and to rest. The nurse came in then to remove the oxygen mask, her breathing was slow but not really laboured in any way. I let go of her hand and stood up to allow the nurse better access. I went to the end of the bed and turned around to look at the nurse who was checking her pulse and the nurse said, āim so sorryā. At first it didnāt register, I thought she was just saying sorry for the situation, but then I looked at my mum and knew she was gone. Her eyes still open but peaceful. I stayed a few more minutes and then left. Her causes of death - Covid, Cognitive Decline, MS.
Soā¦ after 11 years, it all ended within 4 days. I never expected to lose them both at the same time. We never told my mum my dad was in hospital or that he passed away. She wouldnāt have been able to process it anyway - she just would have been upset and if I could spare her the pain of knowing her husband of 50+ years was gone then I was going to do that. I am grateful my dad didnāt have to live without my mum. It was the end of the road for them both, they suffered so much, especially the last year. I have been prepared for my mum being gone for a long time because MS stole her a long time ago. I wasnāt ready for my dad to leave even though it was for the best. I am grateful the memories I have of him are from when he was well. I miss him so much. So many times I want to go and talk to him or tell him something silly, or send him the pictures from I used to get off facebook of the city we live in from the past and then I remember.
Right now I am still looking for work and figuring out what the hell I am going to do after missing so much of life.
My heart goes out to anyone still stuck in these situations, and even more so to all of you fighting to get help in a system that seems more designed to destroy you than help.
2 Likes
I offer my condolences. Itās a struggle to establish a life after intensive caring for so long.
1 Like
@Jen_2105 iām sorry to hear of your double loss. Hope you take comfort that they are both at rest.
The forum is here for current and former carers and we are here for you if you need us.
You might find this in info helpful: Life after caring | Carers UK
1 Like
@Jen_2105 ā¦..Iām so sorry youāve been through so much
Hi Jen, I was widowed suddenly.
Iād loved my husband since I was 16, married at 19. In later years we ran a business together, juggling it with caring for our disabled son and all four elderly disabled parents.
One morning about 20 years ago I found my husband dead in bed, I was 54, he was 58. Cause of death was a massive heart attack in his sleep.
It takes time to find a new life. Not go back to your old one, but looking forward.
The best book I found was āStarting Againā by Sarah Litvinoff.
Initially written for divorcees, published by Relate, but there is so much in there relevant to anyone at a crossroads in life.
Itās easy to read, and lots of ideas to get you thinking about what YOU want - easier said than done after so many years meeting the needs of others!