Visiting guilt, advice please

[TinselTarTars]

Hello,

Im looking to speak to others in similar situations. My parents, both 79, have each had their own health concerns mainly since covid.
My dad had cancer during the pandemic and although he got through to remission, has never ever got back to who he was.
We have been waiting 12+ months for a neurology referral to explore parkinsons.

Over the past month, we have been back and forth to the gp, severe swelling of the feet, he doesn't leave the house (despite offers from all of us to support with a wheelchair etc) he just sits and sleeps, loss of bladder control. He is now in hospital, they suspect sepsis and possible dementia.
My sister luckily works at the hospital so is able to get information quickly. Thing is, she popped to see him in A&E yesterday as hes still waiting for a bed on a ward and she said how awful he looked. He was barely conscious and due to the volume of meds has lost control of bowels too.

I just don't want to see him like this, with no dignity. Hes not asked for visitors and is content with mum sitting with him, but I feel so guilty as this is almost a selfish decision on my part.
I thought I'll drop my mum off today, and she can see how he is this morning. I know my sister will pop in and I can get there at the weekend, once hes been placed on a ward.

Has anyone felt similar, did you regret not visiting?
We've not been told hes going to die, but equally we understand how sick he is.

Thanks in advance.

I would say that the person who needs visiting most is your Mum. Clean her house, do a supermarket shop and cook lots of meals for the freezer so that she can visit him in hospital and come home to somewhere nice.

Absolutely, and we do all of that for her.

I wouldn't want to leave my mum coping with that alone at 79. Don't you think she would like your company while she's sitting with him hour after hour? Wouldn't she like a break to go and get a coffee and food and stretch her legs, you could be sitting with him while she does that, she probably doesn't want to leave him alone. I understand it's hard to see your parent like that but I think in this situation you should put them first and be there. If he were to deteriorate quickly, wouldn't you feel bad for leaving mum to cope with that alone?

I would go with your sister briefly.

It is your choice, but you sound haunted and frightened. The reality will probably upset you, but you will be in a better position to discuss his care with your family and with the hospital once you have seen for yourself what happens.

It is a fact that some illnesses lead to continence problems. But there is still a person in there, and it may be that hearing your voice and seeing you will help him in some way.

We just tried to get in as often as possible. DH and his sister too.

The guilt is pointless you cannot be there all the time that is just a fact of life. Tell yourself you are getting in as often as you can and don’t dwell on the guilt.

Ours was on and off for years. I would definitely get in as often as you can (you determine what that looks like for you as everyone’s situation is unique) just to check in and ask questions of your Dad as well as the hospital staff.

Family advocacy is really important.

I don't know what you mean by 'he hasn't asked forvisitors'. People don't usually 'ask' do they? I would not leave my mum alone to deal with this, she needs your support.

I get that it's hard to see a parent so vulnerable, it's a tough part of life but I don't think opting out will make you feel any better in the long run.

When my dad was sick/dying it was the most painful time of my life but me, my mum and sister all looked after each other. No one took a step back because it was too hard to see my lovely dad wasting away.

I wish you well though whatever you do, it's one of the tougher parts of being an adult for sure.

You need to go. As awful as it is seeing your father like that I think you will regret it if the worse should happen and you delayed. Plus you need to offer your mother emotional support. Her sitting for hours with him is lonely and distressing in itself - as well
as the practical stuff mentioned above, I bet what she really wants is your company.

I would advise you to visit your father. Your mother needs a break from visiting him. She also needs a supermarket shop to be done. Have meals frozen in her freezer so she has something nice to eat after the hospital. Clean up her house and ask can you do a washing for her. She needs the help and support now as she is not a young woman either.
Don't leave it all to your sister or any other family members to deal with all of this on there own. Your siblings will notice your lack of visiting and help.

One friend of mine has selfish siblings and she is making plans to change jobs to one with more hours and money. It means her siblings will have to step up more, sort things out, do care or pay for care when the time comes.
Her parents are in there 80s. They have refused to listen to advice. They have no plans in place in regards to care, bank accounts ect. My friend already did 70% of the care after one of them had a health issue for several weeks. She said I don't mind doing my share but I am not doing the majority of the care going forward.

Honestly your mum needs support, she obviously isn't asking but her husband is ill and she will be frightened, can't you just go with her for half an hour and maybe get her in the cafe or somewhere?

I'm another one saying to visit when you can. Even if he is unaware you being there, your mum will really appreciate it. Hospitals are really lonely places for whatever reason you are there.

My step father was seriously ill in hospital a few years ago and now has an ongoing illness, I don't think i could have left my mum to deal with it. on her own, my sister works shifts so did her share when she could, it isn't pleasant seeing someone so incapacitated, but if we are able we should help out.

I am sorry about your dad @TinselTarTars but I think you are looking for an "it is fine" but I think you need to put your feelings aside and go.

I just don't want to see him like this, with no dignity. Hes not asked for visitors and is content with mum sitting with him, but I feel so guilty as this is almost a selfish decision on my part.

Er.... noone "enjoys" seeing elderly relatives like this do they? its not exactly my idea of a fun time either but you suck it up because you love them and families support each other.

Yes, it is selfish to never go to see him. Noone is expecting you to be there every single day and we all have jobs and our own lives to deal with but to never go at all is pretty awful.

How would you feel if you were very unwell and the people you thought loved you never visited you because they found it unpleasant "to see you that way"?

Your reasoning for not going is that he hasn't asked for visitors, yet you describe him as "barely conscious" and possibly having dementia. It doesn't sound like he's actually capable of asking for anything, so I don't understand your logic.

Your mother needs you and I would have thought you could be advocating on their behalf in relation to treatment plans, place on waiting lists and maximising his dignity.

I don't like seeing my mum, aged 90, with Parkinsons, meningioma and basal ganglia infarcts, but it's my duty to ensure she has optimal care, dignity and to visit regularly. It isn't about me, it's about her.

Thank you for your brutal honesty, I did go in today. This is the start of what could be a long journey and not knowing anyone personally whose been through this means there's no one in real life to off load, share things I didn't want to say aloud.

I have managed everything gp wise up until now, I'm certainly not looking for a "its fine" response, I posted looking for advice from those been in / going through such a difficult time.

Some of you have been particularly harsh in your responses.

I’ve been caring for a sick parent with Parkinson’s and dementia for over a decade. Sole carer to her. She’s just gone in a home but I’m still her only visitor. She’s in a terrible state, and every visit is unpleasant/ distressing. Many times I leave the care home to weep in the car for half an hour before driving home to put a smiley face on for my children. Her two much younger sisters who live very locally and are in great health have distanced themselves for years once they got even just a whiff of it being unpleasant. My parent is going to die with a broken heart because they have avoided visiting her for years. The single most traumatic thing for my mother has been her abandonment by her own sisters. I can’t even put into words the pain it has caused her. Go visit your parent.

Yes, we are in a similar situation. My mum goes every day, I go most days and my siblings go when they can.

Nobody ‘asks for visitors’, what an odd perspective. It sounds like you are trying to reassure yourself that because he’s not telling all of the staff, ‘ I do wish Tinsel would come and visit’ that he doesn’t want to see you, to relieve the guilt of not going!?

Your mum is probably finding this incredibly wearing. Alongside visiting him, supporting her at home is key.

It can sometimes be hard to know what to do for the best. From your perspective you are supporting your mum externally, your sister is on the “inside” for advocacy and you can feel like a bit of a spare part. However you are not - even if he is reticent to be seen “ill” just go with your mum so they both at least know you are there. Don’t undervalue the importance of grabbing last opportunities for fear of being in the way or the support you can provide in situ to both your mother and sister - even if you don’t need to be the main advocate.

When my FiL was 94 and a daily Times crossword completer he had a short illness which left him with significant dementia - locked ward in the nursing home dementia - and unable to recognise DH or SiL. They were torn because their visits actually seemed to make him more distressed but the senior nurse on that ward advised them to keep visiting but be willing to make the visits short or long depending on how he was. What she had spotted and they hadn’t was that he had lost the will to live and there is little you can do with a 94 year old who has had enough except to be there and provide some reassurance. Grab the opportunities, you never know how many there will be.

@Wishimaywishimight "I don't know what you mean by 'he hasn't asked forvisitors'. People don't usually 'ask' do they? I would not leave my mum alone to deal with this, she needs your support."

This. Who on earth asks for visitors? Your father is obviously a very ill man and at his age recovery is far from guaranteed, so it may not be the long journey you anticipate. I'm afraid it's all part of life and we can't excuse ourselves from "unpleasantness". Your presence would support your poor mum as well.

I don’t think the responses have been harsh. Sadly this is the reality.

My brother took this view when my mum was dying. I had to shoulder it all without any assistance and frankly I thought it was abhorrently selfish not to give my mum the comfort of his company because of his sensitivities. Sorry @TinselTarTars it’s probably not what you want to hear but it’s been a huge part of going NC with him.

when my mother was bedbound with cancer, there were a few people who didn’t want to see her in that state of being frightened and the loss of dignity that comes with people having to do everything for you. Honestly, it was and still is the most hurtful thing for me personally to deal with. I’m not sure she particularly noticed but she would have had it been one of her children. Good luck with whatever you choose. But remember choosing not to see someone because of their loss of dignity is the choice they make and not one for the visitor. In reality this is you making a very good excuse for your inability to cope with seeing your dad in the circumstances. It is understandable but worth examining and also considering the regret you might feel later on

If people have been “harsh” perhaps it is due to them having to shoulder the burden of a dying parent all alone whilst siblings/relatives selfishly didn’t help at all as it was “too much “ for them. As if the people who did end up doing everything found it super easy (we didn’t)