My father moved in with me after mum died 5 years ago. Since then he has become physically and mentally more frail and increasingly dependent on me. He is now 97. Initially I had regular breaks and he went to a care home for respite but he didn't cope well with this so I then arranged for a live in carer to stay with him and I was able to get away 3 times a year. Last year he was really uncooperative with her as he just couldn't understand where I was, and who she was and was very difficult. That was September 2019. I had 2 breaks planned for this year and they were both cancelled due to COVID 19, so these last few months I have been exhausted. I am pleased to say I have just had a week away and have totally recharged my batteries. He had the same lovely carer stay with him who has been 3 times, but when I got back she was in tears and he was so distressed. He had lost weight as he hadn't eaten much and one night refused to go to bed. She will not come back again. I have no local family around to help, although my brother visited one day, travelling 90 miles to get here. The carer had just the right attitude but couldn't cope, and I feel that if she couldn't help him, no one else will. . It has taken a week to get him back on track and all is well but it feels like I can never go away again. I keep thinking...he is nearly 98, he can't go on for ever, and I can't let him down now, but physically he hasn't got much wrong with him and I know I need to look after myself. But I dread the thought of leaving him again Any ideas? How have others dealt with this situation?
I need a holiday!
- Thread starter PenH
- Start date
hello @PenH
a warm welcome to DTP
you have gone above and beyond for your father ... he is a very fortunate man to have you looking after him
quite honestly, I don't see how one person can support your father now, you need a team about you, either with carers making home visits or in residential care
I do appreciate that this is not an easy time to consider a move to a care home, and we tend to believe we are the only ones who can support our parents (I call it wearing carer blinkers) ... you have a right to your own life and definitely to have holidays/time for yourself
sorry not to have been much help
a warm welcome to DTP
you have gone above and beyond for your father ... he is a very fortunate man to have you looking after him
quite honestly, I don't see how one person can support your father now, you need a team about you, either with carers making home visits or in residential care
I do appreciate that this is not an easy time to consider a move to a care home, and we tend to believe we are the only ones who can support our parents (I call it wearing carer blinkers) ... you have a right to your own life and definitely to have holidays/time for yourself
sorry not to have been much help
I can identify with every thing you are saying.
HOLIDAYS
We need
HOLIDAYS !
I can cope with so much !
But not getting a holiday !
I am not sure I can explain it properly!
If Covid has any advantage at all it is not having to hear about everyone else’s holidays!
Anything you can tell us about the level of dementia ? Why was the carer so upset?
HOLIDAYS
We need
HOLIDAYS !
I can cope with so much !
But not getting a holiday !
I am not sure I can explain it properly!
If Covid has any advantage at all it is not having to hear about everyone else’s holidays!
Anything you can tell us about the level of dementia ? Why was the carer so upset?
Im assuming that you are caring for your dad by yourself with no outside help. If Im wrong then I apologise, but many people are in your position. The problem with doing it all yourself is that the person with dementia gets used to just one person meeting their needs and it becomes incredibly hard for them to transition to another person. You become their comfort blanket - all the while they can see you they are OK, but if you are not there for some reason, then they become very, very anxious. Eventually, this cannot be sustained and you get the problems you have met.
I would strongly recommend that you get in carers regularly, so that he gets used to having someone other than you attending to his needs. It wont be easy to start with, but I would persevere, introducing things gradually. It will also take some of the strain from you, enabling you to cope better. I started getting in carers to help OH wash/shower and dress and the difference it has made was a revelation.
I would strongly recommend that you get in carers regularly, so that he gets used to having someone other than you attending to his needs. It wont be easy to start with, but I would persevere, introducing things gradually. It will also take some of the strain from you, enabling you to cope better. I started getting in carers to help OH wash/shower and dress and the difference it has made was a revelation.
Thanks.
I am looking after him myself and day to day that is fine. I have worked for 40 years as a nurse in different settings with older people including being manager of a nursing home and specialised in dementia care. So I gave up caring for other people's parents to look after my own. (I am still of working age- just about!) He normally sleeps in the chair most of the day and I am ok to leave him alone for a couple of hours. He's fine as long as I turn up for meal times.
I've thought about getting carers in to help him dress/undress but then he will have to get up/go to bed at the time they turn up. Yes, Canary, you describe the situation exactly. The only other thing with carers is the concern that they are going in and out of different people's houses with the risk of bringing COVID in with them at the moment.
Weasell, he has vascular dementia and has very little short term memory. He is ok as long as his day to day routine stays the same, but can get angry with me at times as he is unable to express what he is feeling, verbally. He is trying to let me know that he still wants to be in control. The carer was upset as she felt she had let us down. She is very conscientious and caring.
I am looking after him myself and day to day that is fine. I have worked for 40 years as a nurse in different settings with older people including being manager of a nursing home and specialised in dementia care. So I gave up caring for other people's parents to look after my own. (I am still of working age- just about!) He normally sleeps in the chair most of the day and I am ok to leave him alone for a couple of hours. He's fine as long as I turn up for meal times.
I've thought about getting carers in to help him dress/undress but then he will have to get up/go to bed at the time they turn up. Yes, Canary, you describe the situation exactly. The only other thing with carers is the concern that they are going in and out of different people's houses with the risk of bringing COVID in with them at the moment.
Weasell, he has vascular dementia and has very little short term memory. He is ok as long as his day to day routine stays the same, but can get angry with me at times as he is unable to express what he is feeling, verbally. He is trying to let me know that he still wants to be in control. The carer was upset as she felt she had let us down. She is very conscientious and caring.
Working with people who have dementia as part of a team is really not at all like being a solo 24/7 carer. You dont get to go home at the end of your shift, you are not sharing the work (crises always seem to happen when you are in the loo!) and you are on call day and night. Social life gets jettisoned and the very fact that you are so desperate for a holiday shows that you are being stretched beyond your limit.
I have not found any problems with having carers in. Yes, I have had to restructure our day, but it is do-able. OH has several co-morbidities and was shielding, but the carers always turned up wearing mask, goggles/face shield, plastic apron and gloves and washed their hands as soon as they arrived without any prompting, so, as a qualified nurse, you would know that this minimises the risk of passing on the virus. The care agency has arranged the carers and clients into bubbles and we have only ever seen 4 different carers - during the shielding period we had the same carer every time. You can never completely eliminate the risk (I might bring it back on me when I go out), but I think this is pretty low.
I think having carers in is good for OH. He gets used to having people other than me in the house and they are bubbly and chatty and I think he enjoys them coming. It also means that if something happens to me OH would be able to cope.
I also like them coming. I had to swallow my pride, but it is working.It gives me someone to talk to other than OH (who doesnt talk very much now) when I may not talk to anyone else all day and I can share concerns about OHs health, Does it sound too sad to say that they are the highlight of my day?
You seriously cannot carry on as you are - something will give. Please dont let it be your health.
I have not found any problems with having carers in. Yes, I have had to restructure our day, but it is do-able. OH has several co-morbidities and was shielding, but the carers always turned up wearing mask, goggles/face shield, plastic apron and gloves and washed their hands as soon as they arrived without any prompting, so, as a qualified nurse, you would know that this minimises the risk of passing on the virus. The care agency has arranged the carers and clients into bubbles and we have only ever seen 4 different carers - during the shielding period we had the same carer every time. You can never completely eliminate the risk (I might bring it back on me when I go out), but I think this is pretty low.
I think having carers in is good for OH. He gets used to having people other than me in the house and they are bubbly and chatty and I think he enjoys them coming. It also means that if something happens to me OH would be able to cope.
I also like them coming. I had to swallow my pride, but it is working.It gives me someone to talk to other than OH (who doesnt talk very much now) when I may not talk to anyone else all day and I can share concerns about OHs health, Does it sound too sad to say that they are the highlight of my day?
You seriously cannot carry on as you are - something will give. Please dont let it be your health.
I just knew you were going to say Vascular Dementia!
My mother (in her nineties ) also has Vascular Dementia.
The last holiday I had was when she fell and then got transferred to rehabilitation. I was on the plane then next day! ( so that’s one tip I suppose!)
I suspect you are a victim of your good training ! So you don’t lecture about all the things they do wrong, and let them have almost complete freedom of choice ? This means that most days will go by in peace and harmony ? Meaning you don’t have carers burn out for 48 weeks a year? Only for four?
The problem with this is when someone else on a timetable comes in there is going to be World War Two?
My mother turned into Hyacinth Bouquet ‘ I’m going to dismiss those carers’!
One feature of the Vascular Dementia that people don’t talk about much is the ‘tidal’ nature of it. One minute you have the dementia the next zooom ! the old mum appears ! Full capacity, opinions and standards!
There are defined stages of dementia! My mother treats this like a snakes and ladders board! Up,down, up down.
The problem is that particularly in your sixties, you have your health and the energy and interest to explore the planet. Just four weeks off could sustain you !
Its that feeling ‘ I am wasting my life ?‘
I don’t know why I am bothering to reply to you when I so obviously haven’t solved the problem myself ! But you are at least receiving bucket loads of sympathy from me.
One other idea may be to try a different care home for the respite stay? Carehome.uk might be worth browsing through?
If I ever get given a ‘superpower ‘ like Spider-Man , then I will choose to be able to predict the life expectancy within one month, of old people. I will charge the families two thousand pounds for a three minute consultation ( two minutes of the consultation will be them thanking me profusely) and I will spend the proceeds on holidays !!!!!!!!!
My mother (in her nineties ) also has Vascular Dementia.
The last holiday I had was when she fell and then got transferred to rehabilitation. I was on the plane then next day! ( so that’s one tip I suppose!)
I suspect you are a victim of your good training ! So you don’t lecture about all the things they do wrong, and let them have almost complete freedom of choice ? This means that most days will go by in peace and harmony ? Meaning you don’t have carers burn out for 48 weeks a year? Only for four?
The problem with this is when someone else on a timetable comes in there is going to be World War Two?
My mother turned into Hyacinth Bouquet ‘ I’m going to dismiss those carers’!
One feature of the Vascular Dementia that people don’t talk about much is the ‘tidal’ nature of it. One minute you have the dementia the next zooom ! the old mum appears ! Full capacity, opinions and standards!
There are defined stages of dementia! My mother treats this like a snakes and ladders board! Up,down, up down.
The problem is that particularly in your sixties, you have your health and the energy and interest to explore the planet. Just four weeks off could sustain you !
Its that feeling ‘ I am wasting my life ?‘
I don’t know why I am bothering to reply to you when I so obviously haven’t solved the problem myself ! But you are at least receiving bucket loads of sympathy from me.
One other idea may be to try a different care home for the respite stay? Carehome.uk might be worth browsing through?
If I ever get given a ‘superpower ‘ like Spider-Man , then I will choose to be able to predict the life expectancy within one month, of old people. I will charge the families two thousand pounds for a three minute consultation ( two minutes of the consultation will be them thanking me profusely) and I will spend the proceeds on holidays !!!!!!!!!
Dear @Weasell
Just wanted to say thank you for giving me a light bulb moment. My mum will not go back to the Memory Clinic having been diagnosed with MCI in 2015. With her history of heart disease most likely got Vascular Dementia but I lack a proper diagnosis.
Everything I have read stresses Alzheimer’s shows as a gradual decline in mental capacity but Vascular Dementia is in steps. However this just does not fit with how mum presents over the years. Reading your description of your mum’s snakes and ladders is exactly how I find my mum. At times old mum sails over the horizon all guns blazing, for a brief time it is like we have gone back five years or more. It makes the sense of loss all the harder to take, but at the same time brings joy in those moments.
Clearly I have no idea what causes this process. I was beginning to think mum must have some uniquely different type of Dementia. Not that it matters you just have to get on with things day to day. But those few sentences of yours really cleared the mist for me. Thank you for that.
My mother has heart failure. Every now and then she gets ‘ a cold ‘ and takes to her bed for a few days! Every time I think ‘oh dear here is the decline’! Then ping !
Back comes old mum!
She does sleep a lot now though!
Sorry not to have replied sooner. My computer has been playing up so went into the computer shop for a while. Thanks for your replies. It is good to know that people understand the situation. I don't think there is a real solution here. The thing is that I enjoy looking after my father. The best times are getting him up and putting him to bed. We have our best chats at these times, although sometimes he thinks I am my mother, or my grandmother. It doesn't really matter; as far as he is concerned we are the 3 ladies who have looked after him at different times in his life. I don't plan on leaving him for the time being. I still feel refreshed from my holiday at the beginning of September and will have a quiet life through to next spring.
Weasell - your situation sounds very similar to mine. I'm not sure about a care home. At least here the surroundings are familiar. The agency I have used for live in care also employ nurses and I am wondering if they have specialist dementia nurses who would have a slightly different approach.
Weasell - your situation sounds very similar to mine. I'm not sure about a care home. At least here the surroundings are familiar. The agency I have used for live in care also employ nurses and I am wondering if they have specialist dementia nurses who would have a slightly different approach.
@PenH .
My situation almost identical! I managed a couple of days away this year as my girls looked after mum.
No one is on holiday really so not jealous!
I have booked a 5day cruise for autumn 2021 and In subsequent years have decided I will go away twice a year ! Will have to have a mixture of carers and adult children but I will do it! I am 60 and I want to have a bit of fun!!
Like you I manage without carers; don’t really need them as I tailor my life to fulfil mums needs and mine slip in as peripheral thoughts and deeds.
I think once the Covid situation is over it will be time to get someone in so that I can have a day out every week. Like your father, mum can be left in the afternoon for a couple of hours but it would be nice to spend a whole day out. I like your idea of more specialised care; perhaps someone who has worked with people in later stages and is willing and acknowledges the need to follow your routines and what you do.
Don’t whatever you do stop the holidays
My situation almost identical! I managed a couple of days away this year as my girls looked after mum.
No one is on holiday really so not jealous!
I have booked a 5day cruise for autumn 2021 and In subsequent years have decided I will go away twice a year ! Will have to have a mixture of carers and adult children but I will do it! I am 60 and I want to have a bit of fun!!
Like you I manage without carers; don’t really need them as I tailor my life to fulfil mums needs and mine slip in as peripheral thoughts and deeds.
I think once the Covid situation is over it will be time to get someone in so that I can have a day out every week. Like your father, mum can be left in the afternoon for a couple of hours but it would be nice to spend a whole day out. I like your idea of more specialised care; perhaps someone who has worked with people in later stages and is willing and acknowledges the need to follow your routines and what you do.
Don’t whatever you do stop the holidays