Thank you Abdullah, that’s so kind of you. You are right, my poor poor mum. She is obviously so scared & confused.
They have now said they will accept the help that is starting on Monday, and I’m sure once they realise how thorough the carers are, it will benefit her enormously. The specialist palliative care nurse said to me and my sister, that it will benefit her fatigue levels no end. Plus the carers can report any issues to the district nurses that we wouldn’t know to look for.
I’m hoping once it gets started, they will see it as a good thing and it takes the pressure off my dad. Both my sister and I sick with worry about not being able to be there as much as we have been. She’s not sleeping either. It’s an horrendous situation.
Not me I’m afraid. I lost my apparently healthy and active mum to a sudden brain haemorrhage in june 2019.
Very much alive and living a normal life aged 74,one day and gone the next
Cheryl x
Hey I really feel for you my mum didn’t want to accept her condition in the begining either she wouldn’t accept carers and It was me who washed and dressed her. Since she couldnt get a shower as it was over the bath and she was unable to get in it I bought a tarpaulin and a bowl… I put the tarpaulin on the floor to protect the carpet and sat her on the commode with a waterproof cushion and washed her there, It was the only way. She only got carers after she went into hospital again. It is understandable that your mother is being like this if she has been a very independent woman but it could also be partly the dementia it can make people very stubborn.
If your mum and dad choose not to take the care package offered and they can negotiate with what they need help with. But if they refuse then one of two things will happen. The social work department will decide your dad is incapable of looking after your mum and the home is unfit for purpose and they will take her into care there will be no choice in the matter. (My aunt was taken away into a hospital and it broke my uncles heart however he managed to fight to get her home and get a care package in place. But that particular hospital wasn’t a very nice situation.
And the other thing that may happen is that if your parents refuse help they could be abandoned by the care system all together and be left to it. But they need help. Either possibility is a bad situation for both of them. Her still being upstairs is not a good situation as her mobility worsens. Your dad can’t carry her downstairs and she is probably in pain going up and down stairs this is an untenable situation for them both and for you.
I know how very difficult it is with them both and their situation and I totally understand your frayed nerves and being at breaking point believe me I had to deal with my mum and a brother who did nothing and while I don’t have kids had to take responsibility for my nephew with the social as my mum was his guardian. but unfortunately you need to try put your emotions aside when you discuss these matters with them it only makes it worse and gets them both upset and nothing is resolved. You have to try to be patient with them. You are patient with your son when things happen and you fix them. You have to realise that this is the situation you are now in with your parents in a way. You have become the parents to your parents in a responsible sense. But at the same time you have to be careful as this can also make them resentful because they have loss of control in there own lives and have been in charge “the adults” and now that situation is breaking down. So you still have to give them the respect they need but also realise that you are now the parent in some ways.
I found out it doesn’t matter if you learn to drive, buy a car, get married, have kids, there is a part of you that never totally feels like a grown up until the day you have to be a parent to your parents. I know you don’t think you can do it but you have your sister to support each other. If you have good friends who are willing to help out and you trust them let them particularly if they have kids the same age, then it wont be so much of an imposition it will just be a play date. Of course they will feel used if you continue this indefinitely but if people are willing to help let them on a temporary basis just let them know how much you appreciate them by giving them a thank you card and flowers or wine depending on whats appropriate for them. It will give you a bit of space. If your sister doesn’t return to full time work to September you still have time. Maybe she could talk to her work to temporarily reduce her workload till this situation is sorted out. Some works will be accommodating I took all my hoildays and some unpaid leave to look after my mum. I had also reduced my shifts previously. Again this is also a temporary solution. Perhaps your mum could go into hospital for care for a couple of weeks. So your dad can adjust the house and himself and you can discuss this with him on his own. My mum had found it easier to accept the district nurse rather that carers but this was when I did most of the care. It was the going into hospital that made her accept carers because if she didn’t then they weren’t going to let her go home. It is a very difficult and distressing situation for all of you. You need to get her downstairs if there is a room there. A friend of mine had to partion off a part of her sitting room and dining room in order to make room for her mum when she had cancer. As her mum was unable to look after her self mobility wise. Another friend of my mums who had to look after her mother in law had to get her garage converted. Of course all of this takes time. Many of the hospices will take your mum in for respite and if they have room and since you have already talked to them I think that this would be the best solution if they have space. It means they take your mum for a week or two. While you get things sorted out at your mum and dads home and make it more accessible for your mum and dads situation. This will also give both your mum and dad space to adjust to their changing situation. The hospice will give your mum counselling and make her realise her situation and that she needs help in a gentle way. It will also make them realise how much help they really do need. Someone there can also talk to your dad. Your situation can’t go on like this indefinitely. You have to talk calmly to your dad and ask him what would happen to your mum if he had a fall or for any reason had to go into hospital himself. He can’t keep taking her up and down the stairs it is too hard on both of them. Also if she is semi-bedridden and there is no bathroom upstairs how is she going to the toilet. Did you manage to get the pads. If you did that she wouldn’t need to go downstairs and if you had a bowl with warm water and a tarpaulin she could be washed and changed in her room. There are also other washing aids for in room washing that you can either get free from the social/district nurses. Or you can buy online from care shops. I bought a special shampoo for my mum that lathers but I found out later that district nurse can get something similar for the whole body. She can also get a commode in her room which means that your dad can empty just the commode bowl down the toilet. These will fix some of the problems and you may only need a carer to visit once a day for a wee check up. In this case. This will all work just now and make it easier for your dad and your mum but it is not a long term solution as she gets worse because at some point she may have to be lifted out with ambulance men also if she decides on this solution she will still have to go up and down stairs to get out the house. However have you thought about a chair lift. You would have to purchase it yourselves but maybe if everyone pitches in this will let your mum get up and down the stairs without help, My cousin and his wife used this solution when caring for her mum. There bedrooms and bathroom were all upstairs and the mother in law couldn’t walk up and down them. It worked very well. There are numerous different solutions to your problems but you have to be proactive and get something sorted out with your parents soon.
I think the pads, chair lift and washing in room might be the best solution for your parents just now with either the district nurse or a carer visiting once a day as a check up. Get the bin I mentioned previously too. However at some point your mum more than likely will have to go into hospital or the hospice.
Oh another thing I just thought of. I presume that your parents still have a double bed. The best thing for both your parents even if your mum is going to be staying upstairs in her room. Is to get rid of this bed and get your dad a single bed and order your mum a hospital bed (the social work supply this its only on loan and you have to return it). This will be hard for both your parents but they will still be sleeping in the same room and both will be more comfortable as your mum can adjust the hospital bed by raising parts of it. Plus the matress is water proof and it moves to reduce bedsores when she is bedridden. Your local hospital will bring it and put it up and will take it down and collect it when it is no longer needed.
I do think this may be the best solution for you. But as you say both you and your sister have other commitments and so have a deadline to get things sorted out. So therefore it will have to be done soon. You will have to cajole, plead and threaten your parents like you might a child. The stick and the Carrot theory. When I say threaten say if you don’t do this solution then this is what will happen and you would like that even less. No its not easy but take a deep breath and tell yourself you can do this. You have support and you can do it.
Quick wee addition. Stairlifts can be about £2000 if you have straight stairs and you may be entitled to a grant.
There is not an official stairlift grant, however, if you are eligible for a Disabled Facilities Grant, it is possible to get your stairlift installation partially funded by your local council.
Take care
Oh yes she is as stubborn as an Ox. Her face dropped when the palliative specialist nurse mentioned a commode, hosp bed and pads. She did it in a very gentle compassionate manner, all the nurses were brilliant with her.
They live in a semi detached, no downstairs loo, but upstairs bathroom. Her bedroom is right next to it. They have a walk in shower. Occ health had listed them as urgent to come round and assess, this was beginning of last week, but he’s still not heard from them.
However, he has been unplugging his landline phone twice now I’ve looked at the plug lying on the floor when I’ve visited, and I’ve had to reconnect it. Within seconds of reconnecting it on Weds, the district nurse rang occ health have most probably been trying to get through. He keeps saying ‘oh I don’t want to be mithered by people ringing’.
We have made peace this morning as we were all crying on the phone yesterday, when my dad said he doesn’t think they need the help, and I was saying it’s not going to go away unfortunately and you need the help because we are in a total blind panic to be honest that we can’t be there in September.
I feel emotionally burnt out, and am struggling massively. I’ve decided to go to Surrey Sat-Weds, then come and help them all day Weds. (they live in Stoke-on-Trent) I’ll go back down to Surrey after and come home on Thursday.
I need to recharge my batteries before I go under with the pressure, the pressure intensity is off the scale as you all will know only too well.
How on earth do people get through this hell on earth
So sorry for getting you mixed up with someone else. Before I joined this forum I was reading posts and someone was posting how they looked after their mum for many years but would often end up snapping at their mother as she would become difficult, and this person now really regretted that they did this, because they should have realised their mum was under so much stress.
Hopefully the lady in question here and her family will be able to get through this difficult time with the help of others on here.
No problem abdullah. It can be hard to remember who has posted what. My mum needed no looking after and was active right up till her shocking and sudden death.
Most of the time it feels so unfair and sometimes I am grateful she didnt suffer the ravages of getting very old
Cheryl
Hey Prettygreeneyes
Yeah my mum was the nicest gentlest person in the world and she put up with a lot during her illness but she could be really stubborn… I think you are right in your assessment that the occupational health has tried to call but couldn’t get through. Sounds like your dad is sticking his head in the sand too. Parents can become like children and the children can be just as bad. I know after my mum got the commode she didn’t want to use it and my nephew and brother didn’t want to empty it. So they would hide it different places so I had to go looking for it everytime I needed to give her a wash. They then took the legs off it. All because they didn’t want to clean it if my mum used it but she was making it to the toilet okay at that time and they knew I was only using it for washing but everytime the same thing.
I am sorry I misunderstood when I was giving you advice before I thought the reason your dad was taking her downstairs everyday was because thats where the bathroom was. After knowing more about the layout of their house, their situation isn’t as bad as it seems as her bedroom and bathroom are on the same floor so if they get a few aids that has been suggested like the pads and the bed situation sorted out and maybe an over the toilet raised seat as well as a wee over bed table that is on wheels ( I bought one for my mum for about £20 and I wanted it back but I don’t know what my family did with it). This is for her to eat off of. She can pretty much live upstairs and with those aids setup your dad should be able to carry on as before. But he will need to stop taking her up and down the stairs because he could slip and fall as she becomes less able and then where will they both be. He probably will only need a carer or district nurse to pop in a couple of times a week. If the district nurse then it will be the same person. My mum had this system in the begining and she was happier with it. I think when your dad sees that the temporary upheaval will reduce anymore upheval for a while and will enable him to go on as he has giveing them both more freedom then he is more likely to comply if he can see that.
If your mum starts living upstairs she will only need to go out for appointments and that is where it would be best to get a stairlift installed. It would give your mum and dad some freedom to be more independant as the illness progresses. And it would be better to do it now before things get worse. The cousin I told you about had the same layout in their house as your mum and dad and the stairlift was a godsend. Their mother in law had unfortunately passed a few years ago but when my cousins wife hurt her foot the stairlift was again put into good use.
When things do get worse it could be sooner or later unfortunately there is no way to tell but that is when carers will have to get involved. Your dad may actually not need them just now if he gets the aids and a friendly district nurse. Also both you and your sister may wish to start discussions with your works to see what options they have in place for time off, unpaid and paid. You or your sister could look into going part time and apply for a careers payment when your mum gets worse. It depends how and when her illness progresses. However it is best to put the feelers out and get the information and see what policy there are. So that if and when the time comes its one stress off your mind as you will have a plan in place.
If you find yourself getting too stressed try taking the daytime Kalms or the supermarket equivalent it doesn’t always work for everyone but it is worth a try as it isn’t addictive and is only hops, lavendar and valerian. Find a way to decompress that suits you. When my mum was in hospital I used to take time outs in the hospital chapel (I am spiritual not very religious) but it was a non-denominational calming place and they also had a couple of quiet rooms. I also am lucky enough to live not very far from the sea. I find going there and sitting can be very calming. You will find your own thing what ever that maybe. You can do this.
Take care
Meebee
As the COVID situation eases then your local cancer charities will start up their support groups again. You should give it a go. they usually do stuff to support relatives of cancer patients too which many people do not know. So you might be able to get a reikki treatment for a nominal donation. Might help you de-stress a little. Take care.
Mum in hospital. She has an infection, they don’t know where, she’s had loads of bleeding when she goes for a wee. She sounds so weak and poorly. I don’t think she’s going to be able to fight it off do you? She was tested for covid but that was negative.
I think she is nearing the end. She’s telling me some arrangements and saying she hopes my youngest son doesn’t forget her. She’s talked about her funeral plans with my dad a couple of days ago.
I think she’s saying her goodbyes. I’ve rang the hosp and they said she’s alert and at the moment doesn’t seem to be showing end of life symptoms, but the way she was speaking, I think differently. Has anyone experienced any of this?
They have all our contact details and despite still not being able to visit due to Covid, if they thought she was slipping away the staff nurse told me she would ring us and we would be able to go in.
I have packed an emergency overnight bag and got clothes out ready on standby by, just in case. I hope I’m wrong. I just want her suffering to end and am praying that god takes her gently painlessly and peacefully into his arms
My heart goes out to you I have been where you are twice. Actually if you count all the times my mum seemed very close to death then rallied then particularly once when she had an infection. Cancer patients are very prone to infections. My mum appeared at deaths door in january after an infection I didn’t think she would make the weekend but she was taken into hospital given antibiotics and rallied. This had happened a couple of times with her because she had lymphodemia a side effect of cancer and cancer treatement. If she does rally then the infection and the stay in hospital has made her and your dad see that they do need help. I think that it is awful and so very hard that you still cant visit (some hospitals are now allowing regulated vists ie only named visitors with full ppe at certain times.) It seems that different areas have different rules at the moment. The nurses will definitely let you know if she is worsening and when you phone you can ask to speak to her. Many hospitals will do this if it isnt shift change or doctors rounds. My mum was in hospital here in April. And I had to phone everyday too. Checking patients for COVID is standard procedure just now it lets the hospital know where they can put the patient. Having probs with the page again so I will sign off but am thiinking of you.
Meebee
Dear Prettygreeneyes
Yeah I am afraid it is quite common. It is because cancer and treatment for cancer weakens the immune system and unfortunately it is also quite common that people, even people who have just been cured of cancer die of infection, this is what happened to Robin Gibb. However in your case it is a very good sign that she is chatty and more like her old self. That is because the infection causes severe dehydration and so when the hospital pump a patient even a severely ill patient full of antibiotics and fluids they tend to rally quickly. They may also give them oxygen and it is a really good sign that she has rallied. Normally they would keep her in quite a wee while but because of COVID they will want her back at home as soon as possible. So they will try to speed up the prossess. They will probably give her an x-ray at some point too to check on the progress of her cancer though they make not it depends on her consultants decision. You can ask to speak to the ward sister or whatever their current title is different hospitals also use different titles. You can ask if they will be checking on the current state of your mums cancer. It would be best if you or your sister where the ones to find out and then you can pass the information onto your parents gently. I am hoping she rallies too and gets through this COVID situation at least. However it does mean she has a new attitude to her situation and you can get things sorted out more easily once she gets home. Though you and your sister may have to prepare for taking some time off to spend with your parents. The doctor will give you a better idea of this but for the moment I will be thinking positively for you. I know how much of a worrying time this is for you and of course you are worrying that because she is in hospital you are also worrying about COVID. I know I did we just cant help it.The thing is most hospitals have the COVID part of the hospital sectioned off and it looks like that ET film we have all seen.
Of course it must be so hard for your dad right now with your mum in hospital. They will have been together for so long and this is probably the first time in years they have been separated. He may be quite distraught thinking what it will be like when she is no longer here. He probably could do with quite a wee bit of support right now. Take care
Thinking of you and your family.
Meebee
O I see, thank you for your support meebee, it’s much appreciated.
Yes perhaps that is a good sign then. She was far more engaging at 8pm and asking what everyone has been doing. She didn’t ask any questions at 4pm, and it was a struggle for her to even find the energy to speak.
The have hooked her up to potassium drip now and I think another antibiotic one. So will see how she goes overnight
Yes my dad has been crying on and off. He has had to go to the bank to sort out an ISA that is in her name. I’m not sure how he will be once she’s gone. He’s strong but she has been his life. I’ve made the spare room up for him for whenever that time comes.
They’ve been together 55 years. He has always done everything for her and has taken great care of her since they were 18. He’s a lovely caring funny man. He’s the glue really that holds us all together.
I can’t even put into words how well he’s done, very often with conflicting advice from the medics. He is 77 and is pretty exhausted but he keeps on going. I’m glad he is getting a few nights respite.
Yes I think you are right, they will see they need some help if and when she comes home x
Dear Prettygreeneyes,
I think considering the way you have talked about her condition that it is highly likely that she will be well enough to come home. It sounds like from what you say she is rallying from the infection. I can not say what the hospital will do but it will depend on whether they decide to check on the progress of her cancer. They will move her as soon as she is well enough to be moved. Depending on the state of her cancer they may decide it is best to move her to the local hospice since she is COVID free or they may decide to move her home with care. They may also decide to move her to the hospice on a respite basis while they set up your home again it depends on space there. If she does go into the hospice you will be able to visit although they will have certain COVID restrictions in place. I am hopeful for you though in the circumstances.
I’ll bet this is one of the few times in his life that your dad has cried many men don’t cry very often. It will be so hard for him 55 years is a long time. That was a really good idea about the spare room he is going to need a lot of help and support. They must have an amazing love story to have been together for so long.
Perhaps when she comes home you could have a lowkey substitute 60th anniversary party as you have realised that even when your mum comes home she wont last till their 60th anniversary however it shouldn’t stop them making memories and reminiscing of all their time together with you and the family. I suggested to my mum to make letters to give to the people she was going to leave behind but she never did, i would have loved a letter from her. I know there are many people who have cancer though who do this even buying birthday cards and anniversary cards for others to give out on special occasions. You or your dad or both could help her with this if this is something she wants to do for the family. For some people it makes things easier and for others it is too difficult, you will know which is right. The best thing is just to reminisce over times past and the really good memories you have shared as a family. Thinking of you.
I haven’t cried properly. It doesn’t feel real. Keep wondering what’s wrong with me.
I don’t know if it’s because I’ve known this was coming for a while, or whether it’s because I’ve been crippled and bought to my knees pre-grieving for the past 12 months.
I’ve literally been able to talk all the funeral arrangements thru tonight, not getting upset once. Has anyone else experienced this?
Hello, that is so sad, I am so so sorry that your lovely mum has gone. What you describe is very normal, the same happened to me, there were lots of tears before, and lots of tears after, but in the week after my dear dad left us, it was just a feeling of being dead inside, no emotions, just stress about things like worrying about mum and all the paperwork that needs to be done. In time, you will cry for your mum again, but everyone is different, and when that time comes, no one knows.
Hi. PG. I am so sorry for such an awful loss. You posted about your mum’s illness before, and I think you knew it would happen. No! There is nothing wrong with you because, at the moment, you can’t seem to mourn. The brain has a built in mechanism to protect us from such trauma by momentarily shutting down emotions. There is so much to be done, and it happened to me. Once the funeral was over and it all went quiet I began to mourn. It was a very emotional time. You will ‘go through the motions’ for a while. It’s why people say ‘you are doing so well’. Give yourself time to grieve. It may well be that you have had so much worry over the past twelve months that a reaction has set in. The feeling of unreality is so common in anxiety, which so many suffer from after a loss. We search for answers that never come.
Please take care of yourself and give yourself time and the space to mourn, as you will.
Bless you and sending love and very best wishes. John.
