making decisions, feeling guilty

[totallyconfused]

my sister and I have been looking after our mother a long time. We are finding it harder and the system-getting help, doctors, consultants etc is getting us down.Her GP doesnt do home visits so getting her there this morning, waiting an hour in the packed waiting room was really hard. her heart sounded fine but offered to do an ecg but there was a long queue for nurse-we said no as her anxiety was through the roof and she was so tired.

We have made a couple decisions:

If we are given the choice-lets say shes in hospital with pneumonia which we wont be treating-and they say she can go home or to hospice. We will choose hospice. Its a fabulous place, my fathers final days were there.We feel it is best for her and something might go wrong at home.It probably be best we arent responsible for her final days.

The occupational therapist called the other day. He said if she falls, call him and a hoist will be put in and I would be trained. he was very positive about the whole thing-saying we would have help 45 mins/3 times a day and how we wouldnt have to worry about sleepless nights anymore as she would be bed bound.

My reaction to this was absolute dread. I also read that if Im trained in the hoist then they only give one carer to help as Im there to do it. I think this is where I will have to say no and if she falls then it will have to be a nursing home.Also it wouldnt really mean no sleepless nights/easier-there are still issues like preventing pressure sores, feeding/swallowing, infections.

I hate to be selfish here but I have delayed my life, have nothing from family members(they dont even bring a cake when visiting)the house will be sold and savings split evenly. Why would I stay and do this for free?As hard as it will be to see her in a nursing home, it would probably be the best place as the services at home are ****. I would imagine a hoist is hard for anyone but for a dementia patient it must be even more so.I dont think I can use it on my mother or be involved in that level of care.

 

[TNJJ]

Hi.It is hard for dementia patients.Some are ok with it but others really struggle with it.Im going to be facing that decision soon for my dad.But we all have our limits.

 

[Trekker]

You are not selfish @totallyconfused you are human. You are also correct that the more burden we allow the system to place on us the more it keeps piling on. I think it’s really good that you have a plan about what to do of these changes happen.

 

[Duggies-girl]

@totally confused, dad was in hospital earlier this year with pneumonia and he was treated with antibiotics and he also had a couple of blood transfusions and iron infusion. He has alzheimers and terminal cancer but they still treated him. I was never asked whether he should have treatment or not, it just happened. I would not have refused treatment for dad anyway because I just don't think that could make that decision so I generally leave it to the doctors although I would object if I really felt that something was not in dad's best interest. Your mum may be further down the line than my dad so it may be different. Dad is back home and worse than he was before the pneumonia but he is still manageable and most importantly he can still take himself to the toilet so not too bad really.

I understand your dread, especially when it comes to the hoisting. I would not be okay with that at all and I am also like you fed up with the fact that everyone presumes that I can continue to carry on just like before with a bit more help here and there. Well the help doesn't really help because it's still the same afterwards and there we are still in the same place.

It is not selfish and I have made the decision that when dad has another downturn (and it will happen at some point) then he will go into a care home or hospice for my sake as much as his. I have done my best up to now but it cannot go on like this for much longer. I feel guilty about that because dad is very compliant and I probably have it easier than most but I still feel worn out.

 

[Trekker]

@Duggies-girl you are not selfish, it is brave to make the necessary choices before you are broken and unable to care for your Dad and stay intact yourself. So many of us feel selfish, we need to keep telling each other that we are not.

 

[Witzend]

You are not at all selfish, totallyconfused. We all have out limits and you have - very understandably - reached yours.
If the hoist is mentioned again, you will just have to be politely very firm and say you are not prepared to do it. And stick to it, however they may try to persuade or guilt you into it.

As for 'no more sleepless nights' - what about calling out or shouting for you?
Honestly some of these so called professionals really don't have a clue. Or else that is the line they're instructed to take, to counter any objections.

 

[totallyconfused]

You are not at all selfish, totallyconfused. We all have out limits and you have - very understandably - reached yours.
If the hoist is mentioned again, you will just have to be politely very firm and say you are not prepared to do it. And stick to it, however they may try to persuade or guilt you into it.

As for 'no more sleepless nights' - what about calling out or shouting for you?
Honestly some of these so called professionals really don't have a clue. Or else that is the line they're instructed to take, to counter any objections.

exactly, she will wake up, she will look for us, be in distress etc.

The advice we have gotten from people is just shocking. The ssytem is broken in ireland and I am not sure it will ever be fixed

No home help hours being given due to lack of funds-they have apparently shut down the system to any new applicants until November to help balance the books.We had 45 mins a day but were given 4 exxtra hours because someone died and they had more hours to give, We have to wait for someone to die to get hours.

There is also talk of them shutting down the fair deal scheme which helps pay for nursing homes due to lack of funds.This country is ridiculoous. We have an aging population-we are heading for an even bigger crisis. Hugely upsetting dealing with this sytsem.

 

[Trekker]

exactly, she will wake up, she will look for us, be in distress etc.

The advice we have gotten from people is just shocking. The ssytem is broken in ireland and I am not sure it will ever be fixed

No home help hours being given due to lack of funds-they have apparently shut down the system to any new applicants until November to help balance the books.We had 45 mins a day but were given 4 exxtra hours because someone died and they had more hours to give, We have to wait for someone to die to get hours.

There is also talk of them shutting down the fair deal scheme which helps pay for nursing homes due to lack of funds.This country is ridiculoous. We have an aging population-we are heading for an even bigger crisis. Hugely upsetting dealing with this sytsem.

I’m so sorry @totallyconfused it sounds dreadful x

 

[AliceA]

May I suggested that all of you look at compassionindying.org.uk.
One can fill in a form, the questions are very comprehensive, they repeat to make absolutely clear.
Finally they edited into a shorter document, one copy is held on line. Copies have gone to GP. And family members.
We for instance refuse peg feeding. We accept palliative care to keep/make us comfortable.

Because it is held and registered I hope it carries more weight with staff. Before that we had a diy living will.
A Friend was a retired GP and he advised it many years ago, the doctors seem more aware than other staff but not even doctors are aware enough.

The whole point, and this may change the misconceptions, EVERYONE, should have one. One never considers it needed until too late. There was a sad case where the mother had one in place, the problem was it was the daughter who needed it. This fit young women had an accident and was in a coma for years. It took her sister a lot of research, looking at her letters and diaries to find proof. She and her mother knew her sisters wishes because it was an open family about what values they shared, the mother was a campaigner.
If we wave these Directions every time we had a treatment they would become more acceptable to everyone.

Few like talking about death especially their own. I was forced too when young and I live with epi-pen at hand.
In hindsight I see this as a gift, I always appreciated life knowing it was not infinite, death being the only certainty. So live lightly with laughter and love.