Being a carer

[Snow4maen]

I really hate to bring this up, but......OP, given both her cognitive decline and her various physical issues it seems to me that your mother has now gone beyond the point where you alone can care for her. Is there not some way you could have someone come into your home regularly, either during the day or the night in order to provide support to you with hands-on assistance and care of your mother? Is there not some social services agency which would be able to work with you? This would give you some respite, some relief, so that you would be able to get some much-needed rest and/or attend to other things, deal with the other usual responsibilities of life...

Thanks for this. Yes I can imagine how it seems, all a bit difficult. But let me try and explain. We have had carers come everyday for a long time now, they are a good company, with a good boss, and all the lady carers that come are very good and I am perfectly happy with them. I have their number, and each day I tell them everything I can to keep them updated, it all get''s logged into the book. They are also my point of contact with social services too, but please understand that the social services are also under lots of demand and pressure.

I keep not just our daily carers but also our boss lady carer up to date in detail very regularly. There are times when they are needed for personal care, for example as mum sits a lot, she can get sores, and struggles to wash in our adapted shower room because of her breathing, they help her wash, when mum will accept this, and help her with personal care that I can't do.

However, at the moment, there is little more they can do practically. They won't get mum to drink more, or eat more, they have tried, she ignores them too. I can do all that. I give mum her inhaler as she needs it. I can give her her medication. Trust me I want what is best for mum, I have our care companies phone number and if I needed them more I would be in contact with them right away, but it's a question of how practical that is right now. Even if I said to the boss lady carer, she would likely say they are not needed more just yet.

If mum gets into a respiratory crisis, I can call the ambulance. The carers can't do anymore. I have been in touch with the mobility nurses that are local, they have tried to help, but every aid they have given mum, walking frame, walking stick, toilet aid. Mum has refused. I have been in contact with the GP, and she has regular check ups with the respiratory team, in fact she has a respiratory review later today. I have also recently informed the GP practise that she has declined recently quite a bit, they are referring her to the memory clinic, but unfortunately there is a wait for this. The doctors know the situation very well, and so do our carers and I will always listen to their advice.

At this point no one can practically do anymore, and if I were to ask our boss carer, I expect she would agree. All the services are under great pressure, as mum's son, and living in our property, it's largely my responsibility to care for mum.

If our carer thought she needed more care, I would do as they say. If they thought she needed to be in a nursing home, I would listen. There is nothing more right now they could practically do.

They don't recommend putting people into nursing homes unless it's really very bad, and I know very well that mum would hate this, and I expect that if she were to go into a home, she would give up and not have long left. But of course if it becomes the right thing to do, we will do it.

There is nothing more the carers can do at this point, I keep an eye on her all day. She mostly sits and watches films. I can't force her to drink and eat, and I try all day to encourage her.

Our man that visited yesterday, Oliver, is going to order mum a hospital bed, which she will find more comfortable as it will move up and down so she can be propped up while lying in it, which will help with her breathing problems, but of course there will be a wait for that.

At any point, if I felt mum needed more help I would get it. I have called 111 several times recently for advice. We can't do much more at this point.

 

[Scepticalscribe]

Thanks for this. Yes I can imagine how it seems, all a bit difficult. But let me try and explain. We have had carers come everyday for a long time now, they are a good company, with a good boss, and all the lady carers that come are very good and I am perfectly happy with them. I have their number, and each day I tell them everything I can to keep them updated, it all get''s logged into the book. They are also my point of contact with social services too, but please understand that the social services are also under lots of demand and pressure.

I keep not just our daily carers but also our boss lady carer up to date in detail very regularly. There are times when they are needed for personal care, for example as mum sits a lot, she can get sores, and struggles to wash in our adapted shower room because of her breathing, they help her wash, when mum will accept this, and help her with personal care that I can't do.

However, at the moment, there is little more they can do practically. They won't get mum to drink more, or eat more, they have tried, she ignores them too. I can do all that. I give mum her inhaler as she needs it. I can give her her medication. Trust me I want what is best for mum, I have our care companies phone number and if I needed them more I would be in contact with them right away, but it's a question of how practical that is right now. Even if I said to the boss lady carer, she would likely say they are not needed more just yet.

If mum gets into a respiratory crisis, I can call the ambulance. The carers can't do anymore. I have been in touch with the mobility nurses that are local, they have tried to help, but every aid they have given mum, walking frame, walking stick, toilet aid. Mum has refused. I have been in contact with the GP, and she has regular check ups with the respiratory team, in fact she has a respiratory review later today. I have also recently informed the GP practise that she has declined recently quite a bit, they are referring her to the memory clinic, but unfortunately there is a wait for this. The doctors know the situation very well, and so do our carers and I will always listen to their advice.

At this point no one can practically do anymore, and if I were to ask our boss carer, I expect she would agree. All the services are under great pressure, as mum's son, and living in our property, it's largely my responsibility to care for mum.

If our carer thought she needed more care, I would do as they say. If they thought she needed to be in a nursing home, I would listen. There is nothing more right now they could practically do.

They don't recommend putting people into nursing homes unless it's really very bad, and I know very well that mum would hate this, and I expect that if she were to go into a home, she would give up and not have long left. But of course if it becomes the right thing to do, we will do it.

There is nothing more the carers can do at this point, I keep an eye on her all day. She mostly sits and watches films. I can't force her to drink and eat, and I try all day to encourage her.

Our man that visited yesterday, Oliver, is going to order mum a hospital bed, which she will find more comfortable as it will move up and down so she can be propped up while lying in it, which will help with her breathing problems, but of course there will be a wait for that.

At any point, if I felt mum needed more help I would get it. I have called 111 several times recently for advice. We can't do much more at this point.

Excellent post.

Reading this brings back so many memories.

I hear you, read you, feel for you and fully comprehend, empathise and understand what you must be going through.

Re the hospital bed (yes, we had one - were supplied with one, too, - and I must say that we found it very helpful), try to ensure that you are also supplied with an air mattress, as well, for that hospital bed; the air mattress that we had came complete with a surprisingly detailed control panel, and helped us deal with the issue of (potential) bed sores.

 

[Snow4maen]

I just want to thank everyone for their concern and help with this, especially Scepticalscribe's valuable insight, which has been very helpful. Yesterday, I came into the lounge to check on mum, as I need to lie down now and then, I am up for a long time during the day. And mum was sat in my chair, for the first time ever, and she had shut the laptops screen down and moved it, and put the mouse and mouse pad on top of it, because there are too many people here and they might steal it!!!! These are delusions. I now, when I leave the room, will take my MacBook with me!!!

It cost £2,150, and I really don't have much money, and I love it very much. With mum anything could happen.

Also, possibly due to very poor sleep for me, I have been battling very high blood pressure for some time, one reading I took a little while ago was SYS 175 DIA 110.....I've been back and forth to the GP's to give readings and alter meds, just upped the Amlodipine to 10mg, on maximum Ramipril. Last weeks readings are much better, more like 130, over 80. So that is a huge relief!!!

I've battled an alcohol problem since I was about 20, I don't mean to sound trite, but I am 50% Irish, I just love to have a drink, whisky, Guinness. I can polish off a 15 pack of Guinness in one or two days. I usually get through a bottle of scotch in two days. But as I am no longer a 20 something and I am supposed to be a mature adult, this must stop.

It all seems fun to enjoy ourselves, but if that causes our health to fail, suddenly it's not so fun. I am 46 now, it's time to take health seriously. I've had my fun. Drinking in excess now tends to cause gastritis, which is not nice. And I have been warned about my fatty liver. On a good day, I can be sensible. But part of my mental health problems are a tendency to self destruction, and on many occasions I've nearly self destructed. So I can understand those who struggle with depression.

On a positive note, having been through clinical depression, and acute psychosis, for some time now I have been quite happy and stable. I've never felt better. The trick is, never give up.

 

[Snow4maen]

So today has been a bit challenging! This morning I was worried about mums breathing, I thought it was too laboured. I called the doctors, luckily they were awesome, a doctor came out within 30 minutes. He checked blood oxygen, it recorded at 85. He felt that was a problem and recommended to mum to go to hospital, mum refused to do this. We both tried to reason with her, but at that point it did nothing. He said to call him back if she changed her mind and prescribed steroids. I gently argued the case with her after he had gone, eventually she came around and agreed to go. I called the doctors back but he was busy and they couldn’t guarantee he could call back. This was too uncertain, so I called 111. Had a chat, described the situation. They send an ambulance as it was classed as an emergency. They got to us in less than half an hour. They did a great job, the equipment they have is more accurate and reliable than the GP, their readings of blood oxygen were about 93. It’s drops when she exerts herself, but recovers quickly. In their opinion, with the waits and delays and stress on the NHS. They could do little for her. It would have been unnecessary and stressful for her. So they discharged her and said to call 999 if it gets worse.

It’s been a bit stressful, but I’m glad it was not the emergency we thought it was. And this is just the COPD, the dementia today has been creative!

 

[Snow4maen]

So one of mum's fantastic carers mentioned something I thought was quite useful the other day..It's been a real struggle to get her to have enough fluids..she mentioned this...

Jelly Drops

So, there is the question of just how much water is in them, they are not cheap. Also, if there is a choking or swallowing issue they may not be any good. But I got some to try them, gave one to mum, and she does not like it!!! Has refused to have any more..well, at least I tried...

 

[Bodhitree]

I’m back to being a carer just a few months after my stepfathers death. It is now my mother who is having problems. She suffered several months of increasing pain in the left side of her head, and now also has much difficulty swallowing and speaking, and since a few days also suffers double vision. On a CT scan they found a paraganglioma, a kind of tumor in her nasal cavity, and they referred her to the Netherlands foremost cancer hospital. We are now waiting for the results of a higher resolution MRI scan.

So because she cannot speak easily and has trouble hearing I am functioning as her mouthpiece on all phone calls, accompanying her on appointments, being her memory and have started keeping track of the most important paperwork like the questionnaires that the hospital sends us. She can still just about use her iphone, so she is still in touch with the family.

We are waiting for a definitive diagnosis. It looks like something progressive that is attacking the nervous system, which is not a good prognosis.

 

[Snow4maen]

I’m back to being a carer just a few months after my stepfathers death. It is now my mother who is having problems. She suffered several months of increasing pain in the left side of her head, and now also has much difficulty swallowing and speaking, and since a few days also suffers double vision. On a CT scan they found a paraganglioma, a kind of tumor in her nasal cavity, and they referred her to the Netherlands foremost cancer hospital. We are now waiting for the results of a higher resolution MRI scan.

So because she cannot speak easily and has trouble hearing I am functioning as her mouthpiece on all phone calls, accompanying her on appointments, being her memory and have started keeping track of the most important paperwork like the questionnaires that the hospital sends us. She can still just about use her iphone, so she is still in touch with the family.

We are waiting for a definitive diagnosis. It looks like something progressive that is attacking the nervous system, which is not a good prognosis.

Gosh..I'm so sorry, that sounds very challenging. You are in the Netherlands? (Such a cool name for a place!) Not sure if you have something like this...but we have in the UK a good network for unpaid carers...I'll pop the link on just for you to see, I have no idea if you can use it from another country or not, but its great for support, really good network.

I often feel like a fraud for calling myself a carer, my situation can be challenging and hard but what I've learnt from the other carers on Mobilise, well. Some people have such hard caring situations, makes mine seem easy. All sorts of health problems. And a lot of the people I have spoken to are full time carers and they themselves have really difficult problems. One lady I spoke to is a full time carer for someone very vulnerable and she's only just come out of hospital herself...who cares for the carers? I can't imagine how much stress your situation puts you under. We need to remind ourselves sometimes that we also have to look after ourselves too, we need to be ok, but also we can't do our job if we are not..


I'll pop the Mobilise link here...I wonder if you have support like this where you are, it can be very helpful...

Mobilise

 

[Bodhitree]

Mobilise looks excellent, a very good service. Here a lot of things are organised through a network of private care organisations. You receive a help level indication from a doctor, this gets you a budget from the government, and then you contact a care organisation to provide you with a certain number of hours of help. We will see how it goes.

My mother is not so badly off yet. She can still walk, use the stairs, shower, use the toilet and even do a little cleaning, which she doesn’t want to all leave to me. No wheelchair in sight so far, although she doesn’t dare use the bicycle anymore with her double vision.

 

[Snow4maen]

I suppose I’m just venting now! But mums refusal to drink when prompted, and poor diet have now resulted in chronic constipation. I have given her lactulose, but you have to wait between doses. It may get so bad I need to call for help! Sigh.

 

[Apple fanboy]

I suppose I’m just venting now! But mums refusal to drink when prompted, and poor diet have now resulted in chronic constipation. I have given her lactulose, but you have to wait between doses. It may get so bad I need to call for help! Sigh.

Tough. Will she eat ice lollies or eat soup. Keep the levels up any way you can.

 

[Scepticalscribe]

I suppose I’m just venting now! But mums refusal to drink when prompted, and poor diet have now resulted in chronic constipation. I have given her lactulose, but you have to wait between doses. It may get so bad I need to call for help! Sigh.

Ah, yes: I do remember this.

Very tough.

Commiserations.

If necessary, drown those drinks in sugar so that she will wish to drink them; I am willing to wager that if they taste somehow sweet she may wish to try them.

Likewise, with soup: Try offering her some sweet soups (say, carrot and parsnip, or pea soup), and you may have some chance of success.

 

[Bodhitree]

I suppose I’m just venting now! But mums refusal to drink when prompted, and poor diet have now resulted in chronic constipation. I have given her lactulose, but you have to wait between doses. It may get so bad I need to call for help! Sigh.

Ouch. Constipation can result in a blocked upper bowel, which may require major surgery and can even be fatal.

 

[Snow4maen]

Ouch. Constipation can result in a blocked upper bowel, which may require major surgery and can even be fatal.

Yes, I was not familiar with how serious the consequences were, I was just going on how much pain she was in. I did call the doctor, but by the time he called back she had been to the toilet. I have lactulose which is quite effective. But the real problem is that she just won’t do what she’s told. We’ve all tried to explain how important it is to get fluids and diet. And I am constantly encouraging her to drink and eat. But you can’t make someone do it. She just refuses. And the more I push it the more combative and argumentative she gets. At least to the point of storming off to her room, shutting the door, and refusing to talk to me. Which is counter productive as then I can’t get her any food or fluids, and with how she is now, it could also become violent. Sometimes you just have to accept there is only so much you can do. She won’t listen!

 

[Scepticalscribe]

Yes, I was not familiar with how serious the consequences were, I was just going on how much pain she was in. I did call the doctor, but by the time he called back she had been to the toilet. I have lactulose which is quite effective. But the real problem is that she just won’t do what she’s told. We’ve all tried to explain how important it is to get fluids and diet. And I am constantly encouraging her to drink and eat. But you can’t make someone do it. She just refuses. And the more I push it the more combative and argumentative she gets. At least to the point of storming off to her room, shutting the door, and refusing to talk to me. Which is counter productive as then I can’t get her any food or fluids, and with how she is now, it could also become violent. Sometimes you just have to accept there is only so much you can do. She won’t listen!

At the risk of repeating myself - and I do remember - (vividly, in three dimensional colour) - just how exceedingly frustrating all of this can be - the only thing I can recommend is to give her what she likes to eat, and will want to eat, irrespective of how unhealthy this may seem.

The goal with this condition is not to persuade her to consume a healthy diet (that battle has been lost, and accept defeat), but to get her to eat (and drink) anything, which, in practice, means, offering her (like a small - and, perhaps, somewhat spoilt - child) just what she will actually want to eat (even if it is in small quantities).

Does she like chips (fries) or roast potatoes?

Then, serve this.

Sausages? Well, then, serve sausages.

Likewise, does she like apple tart, or almond croissants, or cakes?

Then, let that (and we didn't just add cream, but we also used to add maple syrup to apple tart) be served to her.

As for fruit, in our experience, only something very sweet (such as mangoes, or peaches, or ripe and juicy pears, chopped up, etc, tinned - canned - if necessary) will work.

I recall with utter gratitude the extraordinary patience of the carer, who would offer a bite (or a sip), endlessly, with a smile (I didn't have anything like that degree of patience) to my mother; of course, in practice, this meant that mealtimes (as with small children) could take a lot longer than adults have become used to, (and this is a daily occurrence), which means that your time, already considerably compressed, is further constricted, curtailed and controlled, turning what used to be the pleasure of shared repasts into a prolonged occasion of stress and strain.

The very best of luck with it.

 

[Snow4maen]

At the risk of repeating myself (and I do remember - vividly, in three dimensional colour) just how exceedingly frustrating all of this can be - the only thing I can recommend is to give her what she likes to eat, and will want to eat, irrespective of how unhealthy this may seem.

The goal with this condition is not to persuade her to consume a healthy diet (that battle has been lost, and accept defeat), but to get her to eat (and drink) anything, which, in practice, means, offering her (like a small - and, perhaps, somewhat spoilt - child) just what she will actually want to eat (even if it is in small quantities).

Does she like chips (fries) or roast potatoes?

Then, serve this.

Sausages? Well, then, serve sausages.

Likewise, does she like apple tart, or almond croissants, or cakes?

Then, let that (and we didn't just add cream, but we also used to add maple syrup to apple tart) be served to her.

As for fruit, in our experience, only something very sweet (such as mangoes, or peaches, or ripe and juicy pears, chopped up, etc, tinned - canned - if necessary) will work.

I recall with utter gratitude the extraordinary patience of the carer, who would offer a bite (or a sip), endlessly, with a smile (I didn't have anything like that degree of patience) to my mother; of course, in practice, this meant that mealtimes (as with small children) could take a lot longer than adults have become used to, (and this is a daily occurrence), which means that your time, already considerably compressed, is further constricted, curtailed and controlled, turning what used to be the pleasure of shared repasts into a prolonged occasion of stress and strain.

The very best of luck with it.

Yes thank you again. That is actually what I do, and it’s all I can do. I give her what she likes, to eat something is much more important than not no matter what it is.

But she is even fussy with that. I keep a range of food and drink I know she likes but what she will accept varies on a daily basis.

I offered her a range of food today I know she likes and as she has done for some time the only thing she will settle on is roast potatoes. So I did some of them.

At the moment apart from the roast potatoes the only two other things she seems to accept are yogurts, but not all the time. And Pringles. Mostly she will eat them, so I keep them in stock.

And if mums refused something you are only going to get a very negative reaction if you push it.

I will gladly get her whatever she wants, but I try to find out all the time and she can’t tell me. So I just have to stock what I think is best.

The bad diet and infrequent eating won’t help with the constipation but it’s the lack of fluids that is the real problem. She is very fussy and will only accept the drinks I have for her, and often won’t accept them. I’ve tried hot chocolate, milk, milkshake. Mostly they are refused. She hates fizzy drinks. And the other squashes I’ve tried her with have been refused. I encourage her and reason with her all day to drink. And offer other drinks but at the moment it’s just getting refused.

I do everything I can but if she won’t listen I can’t make her.

 

[Bodhitree]

My stepfather would refuse to drink water or milk, but would accept hot or cold chocolate drinks, pear juice, annijs milk, or smoothies. Worth a try, perhaps.