Recently been told my mum’s cancer has spread to her lung and neck. Initially it was just in her kidney. Diagnosed a year ago. Her consultant told me this week an MRI scan of her brain has shown some dementia too. This explains a lot, as she’s been asking daily what the lump on her neck is, we tell her, but asks again the following day. The palliative care nurse visited today and tried to test the water with asking her about whether she has thought of future wishes etc. She hasn’t come to terms with it at all and is terrified. It’s absolutely heartbreaking, she keeps saying she hopes to wake up one day and it will have gone away. She was quite aggressive towards me when the nurse had gone, (which I knew was as a result of the dementia) she kept saying I can’t handle all this negativity, I need you to help with what’s going on in my mind. I just apologised and tried to comfort her as best I could. Dreading what’s coming. My poor dad has been amazing caring for her. They don’t have a downstairs toilet, and he just pushes her up the stairs and walks her down every time she needs to go. Worried about him as he’s 76. Just glad the nurses are going to come in now and give him support. Occ health coming out to do house assessment etc. Trying to be there as much as possible, but live 70 miles away from them
Was just going to sign off but saw your message. I just lost my mum to cancer after caring for her for a while, in the end she too was looked after by nurses and carers. My mum sometimes could handle things and other times couldn’t. She didn’t have dementia but I do know how hard that is to deal with as my aunt had it for a few years before she died, she also had parkinsons, The dementia came and went but it seems particularly cruel when someone already has another disease to deal with. And it is certainly hard to watch them go. Perhaps you could take some time off work and go and stay with them for a couple of weeks and give your dad some support. My mum couldnt come to terms either at times when I talked to her so it meant she dealt with some things last minute which meant it wasn’t done right and has caused a lot of repercussions, which have also been hard to deal with. The thing is at least you have your dad so that means less on the paperwork and legal side. As for your dad there is a lot you can do to help with his toilet situation. My mum had pads when she could no longer go to the toilet they were supplied by the nhs. The district nurse organised it she also organised a comode which I am sure will be much easier on your father to deal with. Is there anyway a room downstairs could be converted into a bedroom for her. I did this for my mum her bedroom was upstairs and I turned the dinning room downstairs which was beside the toilet into a bedroom for her. Things are going to get more difficult in this area so it would be best if you could help your dad organise another situation now. We also got a raised seat for the toilet. Occupational health is one who organised all this for my mum. I also bought a pressstud gun on amazon and cut up her tee shirts and nighties and then put pressstuds on them so they were easier for her to get on and off because otherwise it was causing her pain to get changed. There are a lot of wee aids you can get to help them both. Occupational health may decide to give your dad these aids or they may decide to put your mum in a home. The best thing is for you to be there if you can when occ health is there and explain what you want and need they sometimes only do things and give you stuff if you ask. That is if you have the solution for them. It depends who you get some are better than others. I had to fight for a lot of things for my mum. Other things I bought myself because I didn’t know at first I could get them. There are also local carers groups and cancer groups - depending on COVID situation- that could offer your father some support and advice. Thinking of you.
Hi. Prettygreeneyes. I feel for you. My wife had dementia at the end and it’s so often worse for the carer than it is for the sufferer. They often enter a world of their own to which we have no access. I used to get annoyed with my wife at first because I didn’t understand what was happening, but a kind neighbour, who had gone through this experience with her father, put me wise on what to do and say. My wife also got angry at times, and she had hardly ever been angry in all our time together. It’s all part of dementia. Kindness, love and understanding is helpful.
It will be difficult at times and with all the other complications even more so. You are, no doubt, all doing your best and it’s all any of us can do. Try not to allow the medics to keep testing her for dementia. I had to stop them as they kept asking my wife the same questions over and over that she could not answer and which distressed her.
Take care and come back and talk to us. So many have gone through this experience with loved ones. Blessings. John.
My goodness Meebee, what a helpful and informative post, and so practical. We sometimes forget amid all the grief that we need to be practical as well as caring. It’s a pity your post can’t be given prominence in some way, it would help so many.
Thanks and take care. John.
Thank you so much. This is my first post and your reply has been really reassuring and useful. What a good idea to put press studs on her clothing. I will take all your advice and help on board thank you x
Thank you John. Yes I too was getting frustrated with my mum the other day, as she’s been reluctant to have nurses coming in or even to chat to them on the phone. I firmly told her that they need to come in, and then felt so bad on the way home. This was before we had the diagnosis confirmed. When she was cross with me yesterday for being so negative, as she put it, I just apologised and gave her a hug. It’s so devastating to watch and I’m only just beginning to see it. My nan had it too for 4 years, and that was very hard to watch her decline and get more and more upset and agitated.
What did your neighbour advise to say? Really appreciate the support and am sorry you lost your wife. She would be very proud that you are now helping people like me through this x
Hi. I was advised to go along with what my wife said. In dementia visions often appear to the patient that are a reality to them but not to us. My wife was very psychic, and I began to wonder if what she was seeing was true and me who was illusioned!! But whatever she said I tried to make it into a conversation. She was convinced her parents had visited her. (They died long ago), I just said how nice for you. But maybe they did as she got near the end. Frustration can become very annoying when we don’t know what is going on. People with dementia can change from how we knew them, and that is part of the pain we suffer as we look on.
Love and a hug is always appreciated, but love is so important. They still feel love even though a lot escapes them.
It’s so often difficult at times, but we do find the courage to go on, we all do.
Take care and Blessings. John.
I see thanks for that. Yes I used to go along with what my nan said to me too. She would tell me she’d been shopping, even though she was lying in a bed for 4 years.
I am glad some of it helped a little, I learned a lot as I went along as everything was on my shoulders. I also got my mum a wheelchair and got the council to put handles at her front door as she had a couple of steps. If you do need any more info in better detail. and if there is anything I can help with in that way dont hesitate to ask. Just send me a wee private message. I am sorry that I cant help with the dementia thing but jonathan offered some pretty great advice there. Also your dad might need a carer to help him a female carer can come in once or twice a day to wash and change your mum. I was doing all that in the beginning, driving out to her house and helping her get washed and changed everyday except at weekends because I was working. But after she had a fall the hospital sent careers home with her to take care of that. The fall was the reason I made the t-shirts because she had cracked the bone in her arm. I did actually post some of this advice on a cancer forum when mum was ill and a few people found it quite helpful because the council and district nurses and occupational health do have ways of helping people but they aren’t keen to advertise what they do do to help people so people who are desperate don’t know its like word of mouth or the internet.
I am thinking of you and your dad.
You seem such a wise and kind person so glad your neighbour was able to help you when you needed it and now you are doing the same for others. Bless you.
I think the hug was probably the best thing for your mum and you at the time. I think there are special support groups for carers of people with dementia but it depends where you live and obviously the COVID sit. But check on the national websites and then they will forward you to other places. Unfortunately sometimes it can be quite common with Parkinsona and some cancers that they can cause secondary dementia in susceptible people that is anyone with a slight genetic predisposition. Such a hard situation for you to be going through. My Aunts dementia was slightly scary to me as both she and I had similar medical histories and being on my own getting dementia myself is a scary thought. Hope you have some support of your own at this time. Thinking of you.
This started out as a reply to jon but became a post to both of you.
What you said about your wondering if your wife was seeing the people she thought she saw. I too wondered that about my aunt she wasn’t psychic although it does run in our family. Biut she talked to my dad as if he was there after he died and I did wonder if she could see him or if she had become lost in her memories. That was ok as we were able just to go along with her and then she would snap back. The harder bit came later when she began to be violent which again wasn’t her. Or when she began to undress in the living room thinking she was in the bathroom. She had pads at this time. Also when my mum went into hospital with her cancer I witnessed a lot of people with different types of dementia. There are various stages and various different types. There are ones where people seem to get stuck into a loop like a stuck record and can only focus on this one thing and nothing else will get through while they are in this loop. They can come out of it for a time. My other aunt got stuck in a loop about wanting to go home. A poor lady in one of my mums wards got stuck in a loop about going to the toilet she too had pads but her wires were crossed in her brain she would get up at least 60 times a day the nurses had a sensor on her chair which counted and told them so they could go get her. The thing was she remembered where all the toilets in the hospital where. And the other parts of her brain seemed to function semi normally. As if she only had dementia in one part. It is certainly a very cruel disease. Thinking of you both.
It sounds like you did your absolute best for your mum, and I’m sorry for your loss, also that it all fell on your shoulders to get all the things in place for her. That must have been very difficult for you. I have been doing a lot of the proactive things to get my mum sorted over the past year too. I have an older sister, but she doesn’t think to do these things, and so it was left to me. My sister has been very good though and supports my mum and dad brilliantly as well as working and handling 3 teenagers of her own. It’s completely exhausting isn’t it, even just the days when she is good and she visits my house. Just seeing her dealing with cancer itself and taking all the tabs etc. it really drains me. My mum has been so brave throughout so far. She has a strong catholic faith and her consultant has told her to pray the rosary. She’s really proud and hates getting into a wheelchair (she’s had to have one twice for hospital visits this year). However, the consultant had said on the days she is good, go out as much as possible. I was thinking of just getting a wheelchair and encouraging her to go in it for outings. Where would I get one from? It was heartbreaking yesterday as she got upset when we were driving back from the hospital. She said she looks at her car in the driveway and wishes she could drive it again, or go to the shops etc.
Yes I did a lot for my mum at times I was at the hospital for 13 hour days. It was easy for me that part taking on the responsibility for my mum. My biggest problem was coping with my brother and nephew. Despite there only being two years between us it was like i was suddenly given responsibility for 2 teenagers. They caused so much hassle that I had to fix on top of my job and my mum. But that is a whole other story. For me it was much harder when they pushed me out near the end not being there for her was killing me.
My mum was also proud too but in the end she realised that the wheelchair actually ended up giving her more freedom. Yes a wheelchair is great for outings however you have to do your research first about how accessible a place is. Some parks have paths and she will still get to see a lot. It will probably be easier for your dad too to push a chair about. We got the wheel chair through the district nurse, you have to tell them the type of car you have so they can assess which size wheelchair is best for you. They can also order a pressure cushion for you. its a blue cushion that is thicker than the wheelchair cushion and might be easier on your mum as she loses weight. Because of the cancer and dementia she may either put on weight or lose weight or both. She may also suffer from lymphodema if she has had any treatment it is a swelling in her legs and arms the district nurse is again the person who will look after this. Oh god the car thing yes that was super hard for my mum as she loved to drive. She became such a terrible passenger as she was always telling me how to drive and because she was my mum I just did it. However because of her medicine and her illness she was nowhere near the driver in her head she thought she was and I had to teach myself to be more confident in my driving and to not give in to her and listen (at first I did it because of my own confidence with driving i only learned when my dad was ill) It took me back to being a learner. I had to remind my self I could drive and that I now knew better than her and it was hard for both of us to learn that. It is also hard for her because when she is in her right mind it is a loss of freedom. I did became a driver for my mum and took her out as much as I could. It was hard for her though not being in control. So you have to try and give her as much control as you can but as safe as you can. Things you have to watch out for is to make sure your mum keeps her arms and elbows in when you are pushing the wheelchair I learned that the hard way. Her skin will become like tissue paper and can be cut on things she passes. Let her think the wheelchair is like her new car. Also you may have to put the wheelchair cushion under her seat when you are driving to make her more comfortable. I took my mum to the local hospice day care centre which she really enjoyed. It was a great support for her they ran an outpatient course for 12 weeks and did things like reflexology counselling, hairdressing, rekki and supoport both for you and for her. Obviously things are different because of the COVID but you could look into what is in your area and put yourself and your mum on the list in your local place once things open up again. Also is a hard thing to deal with just now but if you are registered with your local hospice as an out patient should the need arise for them to look after your mum as an in patient then they don’t usually have many beds and someone who is already registered with them as an outpatient tends to get priority over someone else for a bed. My mum had a bed offered to her and it was where she had originally wanted to go to die rather than the hospital. But in the end her GP at the time wouldn’t refer her even though the hospice had offered her a bed. It was during the covid so it was difficult. The hospice only said they would give her the bed because the rooms were individual and she had already been tested negative for COVID. But it was what it was. Still it would have been better for my mum. It might be an option for you it all depends on where you live. I am also judging all hospices by the fact that we have an amazing one locally. The only problem is that it is very small and doesn’t have a lot of beds. However it is amazing and the said thing is it is completely a charity but the NHS treats it as if it is part of them. Dont know about other hospices but it might be something else to look into. Find out now while it is easier for you to deal with and not if you have to last minute. That makes things more difficult emotionally.
At least your sister is doing something as it sounds like she does have her hands full. Although it depends what age the teenagers are if they live near your dad it is amazing how much support they could be. Maybe by cutting his grass and doing odd jobs that might make his life a wee bit easier. Emotional support can be really good even if you cant get the physical support. Another thing I meant to add earlier in the post is that you can apply for a disabled badge for your mum it means she has to get her photo taken for a card so it is best to do that when she is having a good day. The card can be used by anyone who takes her out it isn’t registered to a car anymore but the person you just have to display it prominently when you have the person in the car but do remember to put it away when the person isn’t in the car as it is illegal to use it when the person isn’t in the car.
However it is worth getting one as disabled spaces are wider when you are using the wheelchair and are also much closer to shops and hospitals for appointments etc. You get the form for the badge from your local council. They have a separate department that deals with disabled aids and disabled badges. You can also apply for an extra green bin for your dad if your mum starts using pads. He will be entitled to use two bins as he will need one for her waste. Again thats your local council office. They may also give your mum and dad a discount for the council tax due to illness. Some councils do. The bins and the tax are usually the same office. And lastly for now your mum and dad may be entitled to heating or clothing grants. Some things are done through the council and there are a couple of grants you can apply for from macmillian cancer care. They are really good but their service is different in different areas. However it is worth checking out. They also do a grant to refit your bathroom if you need a special walk-in shower for your mum. It is best getting it done now before she gets worse if it is needed. They do not pay the full amount but most of it. My mother never got it done because she felt it would be too much of an upheaval but it would have made things easier for her. My aunt did get it done and her carers ended up wheeling her in and she was able to wash herself in shower chair. Macmillian also provided telephone support for me when my dad was ill. The nurse I got on the end was really really great because I was crying down the phone to her and she was really nice and supportive but also helpful and informative. Hope a little of this helps.
Thinking of you. Take care.
If you get in touch with Social Services they can often loan a wheelchair. It would be good for you both to get out and I am sure your mum would appreciate it. Take care. John.
Thank you John yes definitely, I’ll look into that today.
So sorry such a long post I should have used paragraphs. Sorry. didn’t realise.
No problem at all, thank you so much for your detailed reply, I really appreciate all the advice. I’ll have a look into the help from the social services for dad. Thanks again x
Can’t sleep, terrible terrible day.
Yesterday my sister and I spent all day at their house meeting with district nurses, palliative care specialist and a lovely nurse from their local hospice. They were all great and spoke about getting mum fast tracked for carers at home. They said as it was palliative, it was free. We came away feeling exhausted but happy a plan was going to be in place to help my dad. He looked dreadful on Wednesday when we there.
Today my dad rang and said mum had been crying as she feels she doesn’t need help at this stage. (She is bedridden until late afternoon, she can’t stand up, needs help to come downstairs and needs someone to shower, which has been my dad so far). The nurse explained that the carers would check her spine, check her for bed sores, pressure sores etc. Help wash/shower her etc. & help her to get dressed.
I was dumbfounded and felt like the wind had been knocked out of my sails. All that hard work yesterday, and he just dismissed it. He rang my sister and told her the same thing.
Both my sister and I were crushed by it. We can’t give the level of support we are doing for much longer, as in September she returns to a full time job and I will then have to be here to sort my 7 year old son out with school etc. I have him on a waiting list for after school care, but it’s full at the moment. Friends could help but there’s only so many things you can put on them.
My dad rang me this afternoon and said sorry, but I was so upset it just turned into a nightmare with me crying hysterically down the phone, by this point he’d put my mum on speakerphone, so she was then crying too. I told them I was at breaking point and we could no longer support them properly without professional help.
They are completely burying their heads in the sand and my mum will just will not accept her prognosis at all. All the nurses said she is in a bubble about it. She admitted to them that she pushes it out of her mind and keeps hoping she will wake up one day and it will be gone.
I feel bad as I haven’t been in touch with them all day, I usually text and ring constantly. I just feel so deflated and drained and at the end of my tether with the frustration that I couldn’t bring myself to contact them.
My husband is taking my 2 children to Surrey for a weeks holiday. I wasn’t going to go, but I feel I need a break from it. My daughter was crying the other night when I said I couldn’t go. My sister insisting I go. She is going to get her husband to talk to my dad, they are pretty close.
Help please advise, just don’t know what to do.
Thank you, am in despair
I am so sorry to hear what a difficult situation you are in. It is very difficult for all involved, including your parents. Your poor mum is confused, and as difficult as it will be, you will have to show great patience and tolerance towards her and your dad. I believe the user @C1971 has experience of caring for a mother who was at times quite difficult because of her health problems (hope I haven’t confused her with someone else), so she might be able ti give you some advice.
Hope things improve a bit for you tomorrow, and please be kind to yourself and not feel guilty, you and your sister are in a terrible situation.