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Care & carers

What I find hardest

(50 Posts)
Luckygirl Mon 01-Oct-18 18:19:04

I was talking with DD today about OH and I came to the conclusion that what I find the hardest is that sometimes he is so weak and ill that he looks as if he won't last the day - I steel my mind to the fact that this is how things are going.

Then the next day (or even within a few hours) he is a lot brighter - nothing like being well and still in a bad way - but certainly a bit better. I then have to jettison my hard-won acceptance and rethink. I find it a massive emotional roller-coaster and just don't know where I am.

Does anyone else have this?

midgey Mon 01-Oct-18 18:24:43

I certainly know what you mean. One minute you are readying yourself for the worst and an hour later they look like a different person! I have decided that he will kill me off and live to be a hundredgrin?

Luckygirl Mon 01-Oct-18 18:56:40

Looks that way! smile

aggie Mon 01-Oct-18 19:16:09

I remember that roller coaster , but then it happens

Luckygirl Mon 01-Oct-18 20:20:56


Luckygirl Mon 01-Oct-18 20:34:20

OH has been referred to the hospice and I am hoping that they will be able to take a holistic approach and improve the quality of his life in some way. His life is pretty darn miserable at the moment.

Jane10 Mon 01-Oct-18 20:40:37

Yours too by the sound of it Luckygirl! Maybe they'll be able to offer you some respite and support? I hope so.

Willow500 Mon 01-Oct-18 21:59:50

So sorry Luckygirl - it is very hard to watch this happen. I remember us all sitting round my MiL hospital bed having been summoned from all over. An hour later she was sitting up and asking for roast beef and Yorkshire pudding for tea.

I hope the hospice referral gives you some both some respite.

MawBroon Mon 01-Oct-18 22:12:35

The holistic approach is exactly what a hospice can do, given the chance. We had long discussions with the Palliative consultant at the hospital about what our local hospice could offer. She was very positive and unlike many hospital consultants was strongly of the opinion that just because some things could be done did not necessarily mean they should or were in the patient’s best interests. I found that hard to come to terms with at the time because I refused to tsee DH as “failing”
It did not come to it in the end but under different circumstances it would have been a huge support. Hospice care is a blessing for so many people

Granny23 Mon 01-Oct-18 22:26:40

My DH (with FTD) can also change from minute to minute. In general he is fairly compos mentis in the morning, slowly declines throughout the day and by 20.00 is totally confused and incoherent, goes to bed and then is back up 6 or 7 times, saying he can't sleep, or thinking there are other people in the house, checking the locks, wanting to 'go home' when we have lived here for 45 years, etc.

This pattern ensures that Doctors, Nurses, friends and neighbours, Barbers, etc. and the staff at Day Care think that he is just a bit forgetful and confused. They have no idea that he turns into a different person as night falls, (they call it 'sundowning') one who does not know night from day, who or where he is, who I am. Someone who has been out, in pyjamas and bare feet, in the rain to check that the car is locked. It is very distressing for him and for me. The following morning he will be full of beans and can't understand why I am exhausted and worn out.

Wheniwasyourage Mon 01-Oct-18 22:52:35

flowersflowers to all of you who are carers. It is such a hard job, even (or perhaps particularly) when you are doing it for someone you love.

annsixty Mon 01-Oct-18 23:21:08

My life is exactly as Granny23 decribes.
My H is currently roaming the house, fully dressed, after my getting him in bed at 8pm .
Sundowning is common and can start from 3pm.
Last Wednesday morning he " absconded " before 7:30 am and went to the local paper shop in his pyjamas and dressing gown, plenty of people about, no-one stopped him or came to tell me.
I was in a panic and rang the police who said he was found wandering and brought him home.
He is now searching for the keys which I have to bring upstairs with me.
I can't sleep and will be like a zombie all day tomorrow but of course will be "on duty " all the long day as usual.
You all have my sympathy and my empathy.

kittylester Tue 02-Oct-18 08:05:49

You are all living with such stress my heart goes out to you!

We had this in a much smaller way with mum. Being a control freak, I was even making plans for 'after'. And then we were back to 'normal'. It was exhausting for us so must be horrendous for you all.

Sundowning is particularly hard, isn't it? sad

Iam64 Tue 02-Oct-18 09:00:33

Yes, Luckygirl, it seams many of us share your feelings.
I'm on daily visits to a friend at the Hospice. The friend looks so much better now friends needs are being met so well by the care there. Colour in cheeks, more relaxed and most of all, no longer looks frightened.

kittylester - your 'control freak' comment made me smile. I can identify with that. I'm sure its a way of managing over whelming feelings but it's also useful to others who don't want to get involved in trying to plan.

sodapop Tue 02-Oct-18 09:17:58

My thoughts and sympathy are with all of you caring for your loved ones. It's difficult when you have so much emotional involvement to see the way forward. Luckygirl the hospice care in my experience is second to none, let them help and support you now.
Bon courage flowers

GrannyGravy13 Tue 02-Oct-18 09:49:35

Luckygirl, My DM lived with us for the last 4 months of her life, we had the palliative care nurses, who would visit and always contactable.

I couldn't cope with her passing away in my house, she needed a massive blood and platelets transfusion which was becoming more painful each time, her consultant rang me, and I asked what would you do if it was your Mother? He replied nothing at all, we rang the PCN and we were fortunate that the local hospice had a bed, she was there for 11 days, the staff were exceptional, they helped all the family, made us feel that her room was ours. We decorated it with her favourite ornaments and photos, we made sure that she always had someone with her, the GGC were made to feel comfy so their last memories of her are good ones.

I still get pangs of guilt for letting her go, but I know it was the correct thing to do for her, I have never seen or met such compassionate staff from the Comsultant down to the cleaners, they all deserve recognition and our upmost respect.

BRedhead59 Tue 02-Oct-18 10:45:21

What I have learned is: - It's never the weakest to go first and one who looks at death's door lasts several more years.

kathyd Tue 02-Oct-18 11:07:06

Sympathy to everyone. It must be so debilitating.
I didn't have this with my mother but am worried that it might happen to me.
I have no family and whereas I don't want my godchildren to be lumbered with me I hope that they would be able to park me somewhere good if it came to it.

BRAVEBETH Tue 02-Oct-18 11:30:30

It is so hard I have it every day with my mother. She is 98. It is hard to not think about death all the time. Yesterday I took her out but was screaming inside Help. It is a horrible nightmare.

keffie Tue 02-Oct-18 11:36:24

We nursed and cared for my late mom through alzheimers/vascular which came into play after a stroke. For us and mom it was all over in 3 years thank goodness for mom and all our sakes.

Mom did spend the last 8 weeks in a nursing home after a nasty fall in respite that left her with a broken leg.

We were in to the nursing home every day and didn't get out of bed for 2 days after she was taken in as we were beyond exhausted. Got up for the bathroom and food. That was it.

Also been through the caring with my late husband who unexpectedly passed away this year. He had been poorly for 2 years with complex medical issues. He was never right after contracting sepsis last October and passed through post sepsis complications in March.

He was coming home that week and bang overnight. You can kind of know how worn out you are however you just keep going.

It's after you realise just how much it has taken out of you. Part of the grief process has been recovering emotionally and physically from the 24/7 care you dont realise you are giving

Luckygirl Tue 02-Oct-18 11:46:31

Thank you for all the helpful messages and love to all in this situation. We are lucky in that OH does not have dementia; just getting a bit muddled when is anxious, crippling anxiety being one of his worst symptoms. He will obsess all the time about whatever it is he is worrying about that day. I run out of reassurances to give - which do no good as the anxiety is one of the features of the brain deterioration caused by PD. And his physical weakness and shaking increase by the day. Every day is filled with dealing with one symptom or another.

The hospice referral is as an outpatient and I am hoping that he can have some calming visits there. I know the place from my previous career - it is in a beautiful setting and is calm and light and airy, and full of kind cheerful people. I hope it will bring a bit of light into his life.

He is pottering around at the moment and emptying the dishwasher! - but I know that in a few hours he will be barely functional, both physically and emotionally.

flowers to all dealing with these difficult lives.

Auntieflo Tue 02-Oct-18 11:55:27

Luckygirl, I am so sorry that you are having a difficult time at the moment. This may sound a silly question, but can your DH manage an afternoon sleep? You say he is at his best in the mornings, then goes downhill. I just wondered whether an extra sleep may recharge his batteries a little, (and yours). Just clutching at straws really on your behalf.

Luckygirl Tue 02-Oct-18 12:00:14

He sleeps most of the time; especially if he has a lorezepam to quell the anxiety. He sleeps with his head bent over - I can hardly bear to watch it - he is making his neck so painful. But, believe me, I have tried absolutely everything to get him to sleep in a more comfortable position.

farview Tue 02-Oct-18 12:52:03

Look after yourself also Luckygirl... sending hugs..x

kittylester Tue 02-Oct-18 13:07:13

(((hugs))) Lucky. You know gn is behind you and everyone in a similar position.