What to do with dad now he is so much worse.

[Duggies-girl]

I know the answer is a care home and I am going looking again this afternoon with two in mind. Dad has deteriorated so much since his hospital stay that looking after him is now just too difficult and will probably make me ill. I have not weighed him yet but he has obviously lost a great deal of weight, I may try this evening just to see. He is able to get around with his frame so mobility has improved and he can still take himself to the toilet so that is a plus.

On the minus side his dementia is ten times worse. He no longer knows where he is half the time and needs constant reassurance, particularly at night with constant calls of 'can someone tell him where he is' and this is getting me down. I am getting help from my brother now but of course it is still me doing twice what he does which can't really be helped and is better than nothing. Dad is sleeping a great deal and eating very little so is back on the milk shakes again. I don't think his cancer has anything to do with this (although it may) I think it is just a downward spiral from his pneumonia and the hospital stay. I can't force him to eat and so he will get weaker. His doctor saw him earlier this week and could not find much wrong with him. He has no pains and can swallow what little he is eating.

If I thought that dad had weeks left then I could carry on with this but if it is months then I can't.

I worry that if I put him into a care home he will become one of those who constantly calls for help that will not come. We have all heard them, the little voice in the distance constantly calling 'please help me' that everyone ignores and I can't bear that if it is my dad.

I don't know, I am just writing it down to make some sense of it. I think I will phone the Macmillan number as well.

 

[KathrynAnne]

I know what you must be going through @Duggies-girl. I often wondered if I’d made the right decision by keeping Mum at home with me. It was certainly very hard and a strain on me and my husband. It would have been so much easier if I had known how long Mum had left but that’s the one thing no one can tell you for certain. Good luck with whatever you decide.

 

[Duggies-girl]

I know what you must be going through @Duggies-girl. I often wondered if I’d made the right decision by keeping Mum at home with me. It was certainly very hard and a strain on me and my husband. It would have been so much easier if I had known how long Mum had left but that’s the one thing no one can tell you for certain. Good luck with whatever you decide.

Thank you @KathrynAnne you are very thoughtful especially at this difficult time when you have so much to deal with yourself. You must take some time to gather your thoughts and yourself together.

I have discounted one home and looking at another on Monday. It doesn't mean that dad is going into a home but I need to look at other options. I spoke to a Macmillan nurse who was very kind and helpful but of course she cannot tell me what I need to know.

I have decided to get a carers assessment for dad and myself although I know that he can't really be left alone anymore because he doesn't know where he is half the time.

If only he had not got that rotten pneumonia we would still be bumbling along as before and managing fine. It's such a shame but we will see.

I hope you get a decent nights sleep tonight and wake up to an easier day tomorrow.

 

[Sarasa]

@Duggies-girl I have no sensible advice to give you, but I am thinking of you and your dad at this difficult time. Your dad sounds like a lovely man.

 

[bmca]

I'm feeling the same about my brother. He is 60 and has Downs Syndrome and dementia. I give him full time care with the help of carers to change and wash him. I am 72 and have grandchildren and greatgrandchildren who have sleepovers. I fetch them from school some days and am a fall back because their parents have to work. How can I let him go into a home when I know he cries for me when I'm out of sight, I would feel so guilty knowing he was not being comforted in the night in a nursing home, but have been caring for him now for 23 yrs. and have wondered over the years if I am being selfish putting him first. [another guilt trip] He is so vulnerable and I have been lucky to have had a supportive family all this time. I am trying to come to terms with his and my needs. and I hope you can without feeling guilty.

 

[Duggies-girl]

I'm feeling the same about my brother. He is 60 and has Downs Syndrome and dementia. I give him full time care with the help of carers to change and wash him. I am 72 and have grandchildren and greatgrandchildren who have sleepovers. I fetch them from school some days and am a fall back because their parents have to work. How can I let him go into a home when I know he cries for me when I'm out of sight, I would feel so guilty knowing he was not being comforted in the night in a nursing home, but have been caring for him now for 23 yrs. and have wondered over the years if I am being selfish putting him first. [another guilt trip] He is so vulnerable and I have been lucky to have had a supportive family all this time. I am trying to come to terms with his and my needs. and I hope you can without feeling guilty.

@bmca yes I understand that. I have been putting dad first for a long time, he has come before my husband and my son, everything else has just been put to one side for later but that has mostly been because dad has cancer and is terminally ill. I just didn't expect him to last this long and it was all so much easier before his hospital stay. Now I am rarely home and I am always tired and probably not very good company when I am home.

23 years is a long time to care for someone and I don't think I could possibly cope with that. I admire you very much for that and yes it is the thought of dad being considered a nuisance for calling out and then possibly being ignored that worries me the most.

I have heard people calling out on hospital wards, calling for help over and over again and mostly they are ignored or some clever soul will reply with a wisecrack answer that is supposed to be funny but its not funny when you know the person and know that they deserve much better. I have had to reassure dad over and over tonight that he is in his own home . I am hoping that he may eventually realise that he is at home and stop fretting so much.

 

[ricki999]

You clearly need a good nights sleep. Thinking of you at a very difficult time

 

[tryingmybest]

Oh I do feel for you as I am in a similar situation. Mum went into hospital after a fall in January and was in for a week but has never really picked up. Last week she began to decline further and last sunday I was worried about her breathing so she went back into hospital. They now won't allow her home although say she is medically ok but she has lost mobility and the physios and hospital SW wont allow her back home to me until she regains some mobility. How is she going to regain that mobility? She is not eating or drinking (Ive put a big sign up to tell them she needs help with this but still they dont), most of the time when I visit she is very aggitated or asleep. Its a 3 hour round trip to the hospital and I am coming away heartbroken, crying and beginning to feel really ill with all the worry. I'm really in pieces as I do want her home but am wondering if a nursing home is now on the cards. Its so difficult to know what to do. As you rightly say....if we knew how much longer, it would be so much easier to make that decision. Love and strength to you.

 

[canary]

I have heard people calling out on hospital wards, calling for help over and over again and mostly they are ignored or some clever soul will reply with a wisecrack answer that is supposed to be funny but its not funny when you know the person and know that they deserve much better.

Please dont confuse the care received on a hospital ward with the care received in a care home that really understands about dementia. On hospital wards the nurses very seldom understand about dementia - even on a ward supposedly dementia friendly - because their goal is to make people better and discharge them. They dont know how to deal with conditions that will not get better.

Go and look at care homes - see how the carers interact with the residents and ask questions about how they would deal with challenging behaviour.

 

[Shedrech]

hi @Duggies-girl
is there a hospice in your area, as it may help you to have a chat with the staff there

 

[Duggies-girl]

Oh I do feel for you as I am in a similar situation. Mum went into hospital after a fall in January and was in for a week but has never really picked up. Last week she began to decline further and last sunday I was worried about her breathing so she went back into hospital. They now won't allow her home although say she is medically ok but she has lost mobility and the physios and hospital SW wont allow her back home to me until she regains some mobility. How is she going to regain that mobility? She is not eating or drinking (Ive put a big sign up to tell them she needs help with this but still they dont), most of the time when I visit she is very aggitated or asleep. Its a 3 hour round trip to the hospital and I am coming away heartbroken, crying and beginning to feel really ill with all the worry. I'm really in pieces as I do want her home but am wondering if a nursing home is now on the cards. Its so difficult to know what to do. As you rightly say....if we knew how much longer, it would be so much easier to make that decision. Love and strength to you.

3 hours is a long way to keep going. Dad was in hospital for three weeks but it was only ten minutes away so I could visit every day. As for the eating and drinking, I told them time and time again that dad was on a soft diet and I would still walk in and find that they had given him a cheese and tomato sandwich or roast beef and potatoes. I weighed him last night and he has lost two stone so he has lost most of the weight that I managed to put back on him over the last ten months. Dad also had three falls while in hospital, one on each ward.

I feel he is much safer at home and probably happier. I hope your mum regains her mobility, dad has and is getting about quite well now, if only he knew where he was going more of the time. Perhaps you should take a look at care homes like I am just so that you have another option even if you don't use it. Sending you some hugs too.

Yes @canary I am looking at one on Monday that is supposed to be a good one for dementia. It is a relatively small one and I was surprised at the fee's, very reasonable I thought.

Thanks @Shedrech I attempted a trip to the hospice on Friday but there was a roadworks and a long traffic queue and I would have been short of time, I will try again on Monday and approach from a different direction and hopefully I will get in there this time. A chat with someone would be really good I think.

 

[tryingmybest]

3 hours is a long way to keep going. Dad was in hospital for three weeks but it was only ten minutes away so I could visit every day. As for the eating and drinking, I told them time and time again that dad was on a soft diet and I would still walk in and find that they had given him a cheese and tomato sandwich or roast beef and potatoes. I weighed him last night and he has lost two stone so he has lost most of the weight that I managed to put back on him over the last ten months. Dad also had three falls while in hospital, one on each ward.

I feel he is much safer at home and probably happier. I hope your mum regains her mobility, dad has and is getting about quite well now, if only he knew where he was going more of the time. Perhaps you should take a look at care homes like I am just so that you have another option even if you don't use it. Sending you some hugs too..

Thank you. I go every day but didn't today as I needed a break but phoned to check shes ok (whatever they deem to think is ok). Its just all so awful. Hospital is not the best place to be these days. Yesterday she had chilli all over her dressing gown and had fallen asleep with a mouthful unswallowed still in her mouth when I arrived 2 hours later. I wondered what on earth it was! Unbelievable. Gosh 2 stone is a lot for your Dad to have lost. Why don't they listen to us at the hospital as to what they like to eat? Must admit I haven't dared weigh Mum. Hospital said they would but guess what? They haven't and they also haven't checked to see if she still has a uti. I just despair. Anyway good luck with whatever you decide to do and do keep us posted.

 

[tryingmybest]

.

 

[istherelight?]

Hello @Duggies-girl
My Mum went into a CH straight from hospital and I found it all very difficult (as did she) BUT her health has consistently improved from Day 1, despite her worsening dementia. She is, quite simply, looked after 24/7. Maybe we were lucky but the carers are so kind and no one is left unaided (though for most of the residents any reassurances are quickly forgotten of course). They check all residents regularly.
After the disaster that was her hospital stay it was such a relief to know that she was being cared for properly. I really hope you will find the same kind of care for your Dad.

 

[canary]

Thats was exactly what happened to my mum too @istherelight?
So different from the hospital.

 

[MaNaAk]

I know the answer is a care home and I am going looking again this afternoon with two in mind. Dad has deteriorated so much since his hospital stay that looking after him is now just too difficult and will probably make me ill. I have not weighed him yet but he has obviously lost a great deal of weight, I may try this evening just to see. He is able to get around with his frame so mobility has improved and he can still take himself to the toilet so that is a plus.

On the minus side his dementia is ten times worse. He no longer knows where he is half the time and needs constant reassurance, particularly at night with constant calls of 'can someone tell him where he is' and this is getting me down. I am getting help from my brother now but of course it is still me doing twice what he does which can't really be helped and is better than nothing. Dad is sleeping a great deal and eating very little so is back on the milk shakes again. I don't think his cancer has anything to do with this (although it may) I think it is just a downward spiral from his pneumonia and the hospital stay. I can't force him to eat and so he will get weaker. His doctor saw him earlier this week and could not find much wrong with him. He has no pains and can swallow what little he is eating.

If I thought that dad had weeks left then I could carry on with this but if it is months then I can't.

I worry that if I put him into a care home he will become one of those who constantly calls for help that will not come. We have all heard them, the little voice in the distance constantly calling 'please help me' that everyone ignores and I can't bear that if it is my dad.

I don't know, I am just writing it down to make some sense of it. I think I will phone the Macmillan number as well.

Dear Duggies-girl,

I was advised on this forum to put dad's name down for a home and when a place came up you don't necessarily have to accept it but it is a back-up plan. I'm sorry to hear that your dad is more confused but pleased that your brother is starting to help.

The carers are monitoring dad's new drug and all went well in the beginning but he has been aggressive again on Thursday although he was better yesterday. When I hear he was aggressive I still get stressed because of love for dad and concern for everybody else and it is still me that it falls down to.

I've just been told that I've had a privileged life by my brother but I he did say he wants to keep it that way! I always say that we carers get the strength from somewhere but I don't know anyway your dad won't want to see you make yourself ill and if he has to go into a home you will still be a carer but in a different way.

MaNaAk

 

[MaNaAk]

I know the answer is a care home and I am going looking again this afternoon with two in mind. Dad has deteriorated so much since his hospital stay that looking after him is now just too difficult and will probably make me ill. I have not weighed him yet but he has obviously lost a great deal of weight, I may try this evening just to see. He is able to get around with his frame so mobility has improved and he can still take himself to the toilet so that is a plus.

On the minus side his dementia is ten times worse. He no longer knows where he is half the time and needs constant reassurance, particularly at night with constant calls of 'can someone tell him where he is' and this is getting me down. I am getting help from my brother now but of course it is still me doing twice what he does which can't really be helped and is better than nothing. Dad is sleeping a great deal and eating very little so is back on the milk shakes again. I don't think his cancer has anything to do with this (although it may) I think it is just a downward spiral from his pneumonia and the hospital stay. I can't force him to eat and so he will get weaker. His doctor saw him earlier this week and could not find much wrong with him. He has no pains and can swallow what little he is eating.

If I thought that dad had weeks left then I could carry on with this but if it is months then I can't.

I worry that if I put him into a care home he will become one of those who constantly calls for help that will not come. We have all heard them, the little voice in the distance constantly calling 'please help me' that everyone ignores and I can't bear that if it is my dad.

I don't know, I am just writing it down to make some sense of it. I think I will phone the Macmillan number as well.

Dear Duggies-girl,

I'm just letting you know that I'm thinking about you and your lovely dad and wondering how you're getting on?

MaNaAk

 

[Duggies-girl]

Dear Duggies-girl,

I'm just letting you know that I'm thinking about you and your lovely dad and wondering how you're getting on?

MaNaAk

Well @MaNaAk I am staying with dad for the next six days/nights and we are sitting watching TV and having a nice time. He actually ate a proper dinner tonight although it was small and I am rather pleased with him. He is a lot brighter and quite happy, I looked at a care home that seemed quite nice but it is only a back up option at the moment. We will see how things go but at the moment things are looking promising.

Ah yes 'a privileged life indeed' I feel that I have been taken advantage of somewhere along the way.

Hope you are well and thank you for being so thoughtful.

 

[MaNaAk]

Dear Duggies-girl

I was pleased to read your post and I hope you are both watching TV again tonight. My invisibles can say that I have had a privileged life because they've never had to worry about or what they'll come home/wake up to. They've never had that fear but we carers also have special memories of our parents through caring. I have many memories of taking dad to lunch and doing things together.

We carers can safely say that we did all we could for our loved ones.

MaNaAk

 

[MaNaAk]

Dear Duggies-girl,

I thought I would come back to this thread and let you know what the home told me yesterday. In an email to me they informed me that dad is treating everyone like his old BT staff. This means that he is going back thirty-years! Sometimes I don't know whether to laugh or cry!

MaNaAk