I feel so angry

[Sueperzoom]

Dad has been in hospital for 2 weeks. The day before he went in to hospital he was walking about unaided and ate a roast chicken dinner! The pneumonia has gone but he's not really eating or drinking much. Every procedure, from checking his blood pressure to fitting cannulas, causes him huge distress. The doctors are leaving him with a subcutaneous drip over the weekend but will then remove it on Monday. Since having this extra fluid he has moments of coming around. Physio managed to get him sitting in a chair and he ate a few biscuits yesterday. Next week they will leave him without any iv or drip and are saying medically they can't do anything else. We've had so many ups and downs over the last 2 weeks with docs saying it's touch and go and then he seems to suddenly get better. I am so completely drained by it all.

I have been by his bed from 7am until 3pm every day and have held his hand as he's begged me to make the doctors stop taking blood etc. I'm so bloody angry. I'm angry that my brother hasn't been in contact with my parents over the past 2 years and has made no attempt to see him even now. I'm angry that my mum spends all her time crying saying she's lonely at home without him and she doesn't want him to die. I'm angry that my mum has booked herself in at the hairdressers this morning and she expects me to take her meaning dad is left on his own in hospital. I've had to make all the decisions about his care as mum just says she can't take it in and cries. I'm angry that I've had to beg work for 2 weeks off so I could be with dad. I'm even angry that my husband is feeling sorry for himself because he has a cold and has spent the past 2 days in bed. I'm angry that I have to go back to work next week and no one else will be there for my dad when he needs someone the most. I can't keep this up for weeks/months to come and can't see an end to this enormous stress. I just don't know how to make it better. Next week I have to decide whether to move dad to a care home or bring him home to us again. I have no idea what is the right thing to do.

 

[Grannie G]

Hello @Sueperzoom

I don`t know how to reply to you but I just couldn`t leave you feeling ignored.

You have taken the lion`s share of responsibility for your dad and are angry about the situation and lack of support from the rest of the family.

Sadly infection has a devastating effect on dementia and doctors cannot perform miracles.

Anger is a soul-destroying use of energy, experienced by many but totally ineffective in providing a solution.

Your own health and strength will be affected if you continue to try to make up for the failings of other family members if it hasn`t been affected by now.

I hope letting off steam here has helped. There will be many who will identify with you.

 

[MartinWL]

It is natural to feel angry but frankly it doesn't help. I would suggest trying to prioritise time so for example tell your mum that her hair-do is not important and you won't have time to take her to the hairdresser. Could your dad have a couple of weeks of more in a care home for convalescence? It doesn't sound as if you have asked family members to help, could you ask them to do specific jobs to help? I think you are going to need to treat this as a project to be managed, making use of what resources you can enlist, and coordinating things. You might start by asking your brother what he is willing to do.

 

[canary]

I am so sorry your dad has reached this stage @Sueperzoom . Infections do terrible things to people with dementia and pneumonia is really nasty anyway. It sounds like your dad, though fighting hard, is not strong enough. now. It really does sound like he is at End of Life, but dementia can surprise you - as you have already discovered.

Im afraid that with dementia, the body shuts down slowly over days, weeks, and even months. It is hard going and traumatic, though probably harder for those watching it happen. Once they get to the stage of not eating or drinking anything at all you are looking at days till the end (my mum went 17 days with no food or fluid at all, but most people do not go this long). It is all a terrible roller coaster.

A very wise doctor once told me that anger was very closely associated with fear and the two emotions were often interchanged. Im not surprised that you are angry, please be gentle with yourself. This is a safe place to express your feelings and, if you wish, we can hold your virtual hand through this period
xx

 

[Duggies-girl]

Hi @Sueperzoom I get exactly how you are feeling, I told almost the same story a few years ago. Dad was in hospital with pneumonia and not being looked after very well. Dad was frightened, I was frightened, he got worse, he got better then he was dying, then he got better and over again. It is all very traumatic and stressful and then there is the anger. I visited twice a day, every day, just to check that he was still alive. I took on everything while my brother went on another holiday. I was angry and still am. Mum died years earlier so at least I didn't have that worry.

You need help or the anger will eat you up. I could not have managed without my husband, he helped me everyway that he could and I am still so very grateful for this. Perhaps your husband is overwhelmed with everything too and his cold has made him feel worse than he normally would. Give him a bit of slack because he is probably stressed out as well and maybe he just doesn't know how to help. Your mum sounds like she just doesn't know what to do so she is going to let you sort it all out. You are probably all stressed.

We managed to get my dad out of hospital and back to his own home in the end but he needed 24/7 care from then on. This fell to me of course with help from my husband. Pneumonia really knocked dad out and he was barely able to stand let alone walk but we worked on him and within a couple of weeks he was walking again but he had declined in every other way, he hardly recognised his own home and never made another cup of tea or coffee. I had to move in with him and spent the next year looking after him 24/7 I had already given up my job to look after him every day so that didn't matter anymore. Dad was still his old self though and he had a happy last year of life. I am glad that I did it now but it took a lot away from me and it was very very hard. It was as if events just took over my whole way of life and I had no way out.

I think you have to let your dad try out the care home at least for a while or you will end up like me. If he comes home then everything is likely to fall on you and your life will change forever and I do mean forever. Even when it is finally over, it stays with you. I don't know what to say about your brother, other than I have a similar brother who is no longer in my life but I doubt that he cares either way because he never cared about anyone other than himself anyway.

The stress is bad for you but the anger is worse because it gets right inside you and it is hard to get rid of. I am still trying and dad has been gone two years now.

I hope that things get better for you and your dad and I hope your mum bucks herself up and starts thinking a bit more about whether she can manage or not but I still think a care home is the best option for now as it may help your dad to recover a bit more and it will give you a bit of a break.

 

[Moggymad]

Your dad sounds like how my mum was when she was in hospital. Hating the nurses coming anywhere near her, shouting & slapping when they tried to change her. I think it is delirium. Hospital said same to me as they have said to you about not continuing with the drip however it was very clear mum couldn’t maintain her hydration & they did have one more go, putting it in her foot in the end due to her aggression.
Final decision to stop everything was taken with the inevitable outcome but i now realise mum has already reached end of life anyway before being admitted to hospital with pneumonia which like your dad they successfully treated.
As your dad wasn’t at the same stage before this he may recover better back home but it will require a lot of effort from everyone so carers are absolutely essential. Having read your previous posts re your mum not dealing very well with things I would say it may be better for you all as a family if your dad could go to a care home initially to try to help him more than the hospital can. Obviously fluids will be the big issue.
We all took turns to go in the hospital at mealtimes to try to get mum to drink & eat ….it was a really stressful time & you do need support with this, let alone everything else going on in your life.

 

[Frank24]

I have a brother like that…
I too have felt very angry with everyone and everything when I was over loaded with managing my mums care and hospital stays. I kept going until suffering a back injury which forced me to admit I couldn’t keep going like this anymore and made the decision for my mum to go into a care home. None of this is easy stuff to deal with especially when you feel alone. My husband did his best, but ultimately ALL the stress fell on me. I can so relate to how your feeling, that the worry is never ending. I still worry now, and the guilt some days is horrendous. But being angry and stressed to the max is not sustainable for too long without it destroying you.

 

[Sueperzoom]

Hello @Sueperzoom

I don`t know how to reply to you but I just couldn`t leave you feeling ignored.

You have taken the lion`s share of responsibility for your dad and are angry about the situation and lack of support from the rest of the family.

Sadly infection has a devastating effect on dementia and doctors cannot perform miracles.

Anger is a soul-destroying use of energy, experienced by many but totally ineffective in providing a solution.

Your own health and strength will be affected if you continue to try to make up for the failings of other family members if it hasn`t been affected by now.

I hope letting off steam here has helped. There will be many who will identify with you.

Thank you all for your replies. I can't tell you how much this forum has helped me. No one else really gets how hard it is. I have decided to take today off. I forgot it's half term next week (I work in a school) so I have another week to go. I tried to talk to mum about the options for dad when he is discharged from hospital. She refuses to make a decision. I've been very clear that I will not make this decision for her. My relationship with my mum is under so much strain at the moment. When I look back, she has always been protected. She refused to care for her dying mum, leaving her sister to do it all, when she was younger because it was too hard for her, and she has always had dad to sort everything at home, from paying bills to deciding where they live. Anyway, I will try and take today to recharge my batteries and get on top of the ironing ? and see what next week brings.

Thank you for letting me unload. ❤

 

[Grannie G]

I have decided to take today off.

Well done. Try to do this regularly. It will help you stand back from your situation and the demands made of you.

 

[Dunroamin]

hello @Sueperzoom and welcome. You are in such a difficult position and I hope you get support from the forums.

Anger is a negative thing. Both destructive and often a result of being in a position of powerlessness. It was my own first reaction on being diagnosed myself but I soon realised it would be of no help to me.

I note you say you 'have no intention of making a decision for her' in regards to your mother deciding what is best for your father. However, someone need to step up to the role of playing advocate for him. Whether that be you, or social services - it should be considered. Have you been in contact with the hospital social work department?

And send your mum to the hairdressers in a taxi.

I hope you manage to recharge a little next week

(My words but posted with assistance.)

 

[Grannie G]

You are an asset to this forum @Dunroamin

 

[Nipper’s helper]

Dad has been in hospital for 2 weeks. The day before he went in to hospital he was walking about unaided and ate a roast chicken dinner! The pneumonia has gone but he's not really eating or drinking much. Every procedure, from checking his blood pressure to fitting cannulas, causes him huge distress. The doctors are leaving him with a subcutaneous drip over the weekend but will then remove it on Monday. Since having this extra fluid he has moments of coming around. Physio managed to get him sitting in a chair and he ate a few biscuits yesterday. Next week they will leave him without any iv or drip and are saying medically they can't do anything else. We've had so many ups and downs over the last 2 weeks with docs saying it's touch and go and then he seems to suddenly get better. I am so completely drained by it all.

I have been by his bed from 7am until 3pm every day and have held his hand as he's begged me to make the doctors stop taking blood etc. I'm so bloody angry. I'm angry that my brother hasn't been in contact with my parents over the past 2 years and has made no attempt to see him even now. I'm angry that my mum spends all her time crying saying she's lonely at home without him and she doesn't want him to die. I'm angry that my mum has booked herself in at the hairdressers this morning and she expects me to take her meaning dad is left on his own in hospital. I've had to make all the decisions about his care as mum just says she can't take it in and cries. I'm angry that I've had to beg work for 2 weeks off so I could be with dad. I'm even angry that my husband is feeling sorry for himself because he has a cold and has spent the past 2 days in bed. I'm angry that I have to go back to work next week and no one else will be there for my dad when he needs someone the most. I can't keep this up for weeks/months to come and can't see an end to this enormous stress. I just don't know how to make it better. Next week I have to decide whether to move dad to a care home or bring him home to us again. I have no idea what is the right thing to do.

Hello @Sueperzoom I have a brother in law who does absolutely nothing for his mum. My husband and I have decided to pretend he doesn’t exist, rather than hoping or expecting help from him. It has helped a little.

 

[millalm]

@Sueperzoom I can identify with your situation, everything from the missing brother (who I love but is thaveless) to being the family decision maker, also family party and event , holiday meals planner, chief cook and bottle washer- yea many years of passive anger lol. Went through health issues with my Dad for many years, many near death situations, support and decision making right up to the day he died, ( because after speaking to doctors I decided another trip to the hospital, days in an ER corridor and more failed blood transfusions were not likely to save him this time)

One word though about your Mum, I had been so focused on my Dad that I had not realized that my Mum's typical forgetfulness, and things we had always laughed about being part of her personality were sliding into what has become late stage mixed dementia- 10 years later. My first real wake up call that I could not laugh off or explain away was when I went into the hall after sitting up with my Dad all night to tell my Mum she needed to come really quickly because my Dad's breathing had changed , she smiled sweetly at me and said she would just finish the muffin and coffee ' a kind nurse had brought me for breakfast'. When I read about your Mum wanting you to take her to the hairdresser when your Dad could potentially be dying it made me wonder about her reasoning.

In that moment I realized that by making all of the decisions to ease the burden for my Mum (and brother) for so many years I had fallen into a trap of my own making. I had become a martyr to the cause and resented the people that I felt had put me in this role when it was actually myself. Part of my problem is that I have always been a Type A take charge person, and frankly, I usually think I know what's best and the best way to do things. ( laughing at myself) also I can do it faster LOL

It may be different in your situation , but is it possible that you are in the same boat ? If it is , it's not too late to change it.

If I could go back and do things differently I would have sat my brother and his wife down and said I can't keep doing this by myself, how can you help? When they said 'but you are so much better at these things', I would have said 'thanks' now if you have no ideas how you can help, I'll give you some ideas. At least then the passive anger wouldn't have all been mine.

ps I would advise a care home for a few weeks, if only to give you (ALL) a chance to figure out how best to plan for the support for both your Mum and Dad in this next phase of their lives.

Good Luck-

 

[Sueperzoom]

Hello,

I just wanted to update you all after you had been so good replying to my thread. Reading your replies really helped me when I was feeling very low and isolated.

So, dad has fully recovered from pneumonia. He is still in hospital only because we are struggling to find a care home for him.

We have days where we can't wake him and he doesn't eat or drink but he is definitely improving. As he can no longer walk and is at a choking risk, we don't feel it's safe for him to be home with us.

The new nightmare is trying to find a care home. There are so many awful ones out there ? we have found a really lovely one with a vacancy. We will have to pay £200 per week on top of the money being paid for by social services and his pension. The only downside is we have to book visits in advance and are limited to 30 minute visits. They can't guarantee we'll be able to book a visit every day depending on how many other visitors are booked in. Is this normal? I understand they are trying to limit risk of infections and they are a large home (45 residents) but I am really unhappy with this policy.

 

[MartinWL]

Hello,

I just wanted to update you all after you had been so good replying to my thread. Reading your replies really helped me when I was feeling very low and isolated.

So, dad has fully recovered from pneumonia. He is still in hospital only because we are struggling to find a care home for him.

We have days where we can't wake him and he doesn't eat or drink but he is definitely improving. As he can no longer walk and is at a choking risk, we don't feel it's safe for him to be home with us.

The new nightmare is trying to find a care home. There are so many awful ones out there ? we have found a really lovely one with a vacancy. We will have to pay £200 per week on top of the money being paid for by social services and his pension. The only downside is we have to book visits in advance and are limited to 30 minute visits. They can't guarantee we'll be able to book a visit every day depending on how many other visitors are booked in. Is this normal? I understand they are trying to limit risk of infections and they are a large home (45 residents) but I am really unhappy with this policy.

My mother's care home was good but for most of last year was only offering one 60 minute visit a week. That actually suited me as I live a long way away. I would ask if they intend to return to open unrestricted visiting when they feel they can. If this is the best home I would be inclined to tolerate the limited visits, after all your dad will be there 24/7 so his quality of card and life is the most important thing.

 

[Frank24]

The reality of placing someone in care at the current time means accepting limited visits it seems. I can book in once a week and it is limited to two hours. As I live away they have allowed me to extend my visits without too much fuss. The hardest thing is to put someone in care with COVid protocols in place. However, it sounds like your dad needs professional nursing care. It will be an improvement on the hospital. I too was shocked by the level of care and the type of care homes available in my mums area and beyond when I looked..

 

[PippaS]

Ask the home if you can be classed as an “essential care giver” and if that will mean you can visit every day? I can even when the home has Covid unless Dad or I test positive. Visiting guidance from the government will change again soon although it is up to the home how they implement this.

 

[Origano]

Dad has been in hospital for 2 weeks. The day before he went in to hospital he was walking about unaided and ate a roast chicken dinner! The pneumonia has gone but he's not really eating or drinking much. Every procedure, from checking his blood pressure to fitting cannulas, causes him huge distress. The doctors are leaving him with a subcutaneous drip over the weekend but will then remove it on Monday. Since having this extra fluid he has moments of coming around. Physio managed to get him sitting in a chair and he ate a few biscuits yesterday. Next week they will leave him without any iv or drip and are saying medically they can't do anything else. We've had so many ups and downs over the last 2 weeks with docs saying it's touch and go and then he seems to suddenly get better. I am so completely drained by it all.

I have been by his bed from 7am until 3pm every day and have held his hand as he's begged me to make the doctors stop taking blood etc. I'm so bloody angry. I'm angry that my brother hasn't been in contact with my parents over the past 2 years and has made no attempt to see him even now. I'm angry that my mum spends all her time crying saying she's lonely at home without him and she doesn't want him to die. I'm angry that my mum has booked herself in at the hairdressers this morning and she expects me to take her meaning dad is left on his own in hospital. I've had to make all the decisions about his care as mum just says she can't take it in and cries. I'm angry that I've had to beg work for 2 weeks off so I could be with dad. I'm even angry that my husband is feeling sorry for himself because he has a cold and has spent the past 2 days in bed. I'm angry that I have to go back to work next week and no one else will be there for my dad when he needs someone the most. I can't keep this up for weeks/months to come and can't see an end to this enormous stress. I just don't know how to make it better. Next week I have to decide whether to move dad to a care home or bring him home to us again. I have no idea what is the right thing to do.

 

[Origano]

I very much sympathise with you about care homes and I am dreading my husband will have to be moved from hospital into what would have to be a nursing home. Not long ago when he was still at home, my husband went into a care home and caught Covid. On returning home, I promptly caught it and when down with a bang, possibly because my immune system is depleted anyway. He was on a medical Covid ward in a general hospital and had to stay there until I was better and I don’t thing this period of time helped his condition.
You also have to cope with your mother. I should accept the half hour visit to your father and go when they allow you to, even though it may not be every day. You will get all you can really deduce about your father’s care from this visit and you are doing your best for him. if you can, allow yourself time to look after yourself. It’s a shame your brother cannot step in occasionally to visit to give you a break, but I know it is difficult with families. With all good wishes.