Lonely place


#1

My dad is in a home as I was the only member of the family who let’s say bothered to care. It’s hard making that decision but people say to me you have to look after your health but it’s a horrible guilt feeling you get. I know I had to do it as I wasn’t getting any rest or proper sleep. The home is lovely, the staff so caring but all my dad says when I visit him I have nothing to worry about its all fine. Oh I love my dad so much for bringing me up as a single parent.


#2

Hi Tether,

These decisions are never easy but you sound like a caring person. The home sounds lovely too. You had to make a decision for you and your wellbeing as well as your fathers.


#3

Thank you for your lovely words, it’s helps alot I am there for my dad as he was always there for me . I feel refreshed now because of the rest and relationship is probably alot better now when I see him.


#4

Hi @Tether,

A warm welcome to the forum.

I can appreciate how much of a tough decision this must have been for you. But as Divine1 stated, you sound like a very caring person and you obviously love your dad very much. The care home that you’ve chosen for him sounds very nice and judging by his feedback, he seems to be enjoying it which is great.

We’re here to help you in any way we can so please feel free to continue using the forum for more moral support. :slightly_smiling_face:

Best wishes,
Reah


#5

Tether

I myself sister and 2 brothers had to put my mum in a home.As my sister and I said to the lady in charge of the home when.we went to have a look around’ it is with a very heavy heart that we are doing this.'
My mum had dementia.which is so hard as you actually lose them twice .firstly when they take dementia ás they are not the person they were and then when mum passed away 3 years this Sept.

Aged 88.FIRST MY MUM
FOREVER MY FRIEND.


#6

Thanks for all your kind words, it helps when your fighting all your emotions. Other people’s experiences are a great comfort to me, so thanks for all your replies.


#7

My Mum has stage 3 Parkinson’s. Until Dad died last year she had him 24/7, now it’s me. She is terrified of going into hospital or a home and has insisted that we do not make that decision for her. But it’s just as hard caring on your own and the guilt from even feeling unwell is horrible. I am doing all I can for her but I must also think of my own health and look after myself. Each of us is doing so much in our own ways but I know that eventually outside help must be sought. Many of us who care for ageing parents have husbands and families too. For those of us who have no one and even the siblings or other close family stay away this is a hard thing we do. As a Christian I must tell you that my consolation is that I know simply ‘that God is watching’.


#8

My husband has end stage Parkinson’s and dementia.We were able to support him at home until late last year with a struggle.My health was beginning to suffering and I was getting very little sleep or rest but you push on.He was admitted to hospital with a UTI all professional recommended nursing home.
Having to make the decision of placing my husband in a nursing home was the most difficult decision I have ever had to make.We are now 6 months on and he’s in a very nice home well looked after by staff who are very caring and compassionate.
I didn’t realise how unwell I was becoming mentally and physically until I was able to take time out.
I am now able to have quality time with him.
Difficult decision to make but now I look back it was the right decision.


#9

My feeling now after 3 months of my dad being in the care home is I do feel better about it all now. The residents are nice, all the staff are lovely. It’s nice the other day a lovely care assistant said your dad thinks highly off you which brought a little tear to my eye. I have family but I am the only who grabs the bull by the horns quite sad really. My dad use to take me on days out all the time, it must of been hard as a single parent for him but I keep on saying I am helping you now dad when he feels the need to apologise for me helping him.


#10

Hi @dee,

Thanks for being so candid about your experience caring for your mum. I can imagine how challenging this responsibility must be for you, however, there are options other than sending your mum to a care home. You might be interested in respite care where you can receive help with the care of your mum for a few hours per day to give you a little bit of a break.

Respite can be given in a number of ways including, a social services care worker, or someone from a charity such as Carers Trust, coming to your home to care for your mum, this can be occasional or frequent. We have a lot of information on our website here, https://www.parkinsons.org.uk/information-and-support/looking-after-yourself-when-youre-carer.

If you’d like additional support on this, you can also contact our helpline and speak to one of our advisers on this. Please feel free to give them a call on 0808 800 0303.

I hope you find this information useful and please take care.

Best wishes,
Reah


#11

Dee,

If it’s any consolation, and I know it may not be, I have two fit and able siblings who do precious little to help Mum and Dad who wish to remain at home. As friends tell me, I may as well be an only child. I actually think it’s possibly more frustrating knowing they exist but won’t offer much help other than a twice yearly visit from 2 hours away. I hope in vain that sometimes they’ll step in, knowing they won’t, and then feel let down.

Mum is bedbound with dementia and Dad has Parkinson’s and early signs of dementia. Against their will (and many heated discussions when they were still mentally able), I organised carers (day calls and nightsitter) and changed care companies when the quality dropped badly. I’ve arranged daysitters (some are free from local council) and I visit every evening from tea until bedtime when I treat Dad’s pressure sores and wash his bottom before bed as he doesn’t think “the girls” (carers) should be asked to do it. I do their shopping, medical appts, household repairs, clean the bathrooms, and act as entertainer when Mum is sundowning badly.

It often feels a thankless task, and like you, I feel guilty when I’d laid up. I could be in bed with flu and Dad will still call me with various questions, and ask me to pop up the road to see them. His repeated view is I should sell up and move back in to become their 24/7 carer. I veto that as without my own space, I would literally be a husk within a week.

I gave up my career two years ago and am living on savings and redundancy money which is dwindling. I will never regain the same level of employment at my age with two years out of the industry. And to be honest, at the moment I probably can only hand a simplistic job where I clock in and clock out rather than intense project mangement work carrying over many months/

I don’t really have a God, but I carry on by knowing that I’m doing the best I can to help frail vulnerable old people who raised me as well as they were able.

I’m sure at the end of it, I’ll still have that ‘Schindler’s List’ moment, when I look back and think I could have done more. Apart from giving up sleep altogether, there’s probably not more I can do.

A friend of mine just lost his mother to dementia - he now wishes he could re-live the constant phone calls day and night from her to change channels on the TV.

Doing the best you personally can do, is the best, and nobody can ask any more than that :slight_smile: x


#12

Thank you so much for your mail. I think that most carers will resonate with our findings! My problem now is not about having my life on hold or anything like that as I’ve found other hobby interests to occupy me. It’s being so isolated because I can’t leave the house, have all the shopping delivered and usually only shop on-line. I find it hard to deal with life if I have had too many wakeful nights and Parkinson’s people are so hyper - never the same 2 days running - and this adds to my mental state as I try to continue to be patient. But I’m only human! I was always a Christian but since coming to live in at my Mum’s I have become even more ‘‘religious’’ and this has also held me together. It’s so nice to know that there are people like yourself out there to talk to if anything needs a discussion. Thanks again.


#13

Hi Dee,

I understand completely. This forum is great for letting out what’s trapped inside.

On a practical level are you getting the help you’re due?

Attendance Allowance - paid to those with illnesses who can’t get out of the house to help cover help coming in. My parents both get the higher level of £83 a week. AgeUk came out to help fill in the forms correctly to stand the optimum chance. This might help pay for daysitters to give you a break.

Local befriending groups - there are often local voluntary groups who can offer a sitting service. Again to free you up so you can claim some personal space.

Free local authority sitting service - our local council in Kent offers 4hrs free sitters per week via a care company. It was accessible after meeting with Social Services. I split it into 2hrs on a Weds and Friday to help break up the week for Mum and Dad. This allows me to switch off my phone and relax - even just a snooze if needed.

Elderly Domiciliary Consultant - Mum was seen by this type of consultant from the hospital. He basically did a baseline check of her to assess her general health and get it documented, and then put her under the monitoring of the local community nursing team. The senior nurse (Advanced Community Practitioner) pops out every few weeks to do basic checks but also adds weight to access other services (NHS or local authority). She’s also my first port of call if Mum is unwell rather than relying a random GP who doesn’t know Mum doing a home visit. Having her onside has helped access to Occupational Therapists and home adaptations.

Like me, I suspect lack of sleep and control are your main enemy. Without sleep it feels impossible. I end up staggering on somehow but in a grumpy way and feel guilty for not bringing the light and laughter I usually muster up.

Hope something above is of use - or it might lead to other help available in your area.

Take care x


#14

Take care of yourself too Hal.
Yes, lots of your mail was useful, thank you so much. I have help in the garden now, also Age UK send in someone once a month to take care of the housework. Such a relief as I always hated those things anyway!:slightly_smiling_face:
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