Feeling overwhelmed

[charlottemc]

Hi, my first post and new to this forum and seeking advice. I have been the main carer for my Dad (72 yrs and has vascular dementia) for the last 2 years. I can just about cope as he is still fairly independent and we have had a 12 month lockdown where I couldn't go anywhere and could just focus on him mainly. I do his washing, shopping, checking in on him daily and manage his hospital/doctors appointments to the best of my ability. I take him driving as his driving licence has been revoked and sometimes have to go & see him in the night when he calls me because he doesn't know where he is and sometimes he has fallen. I try and manage his finances to the best of my ability too. I have my own business, two (fairly grown up kids) and a very supportive partner who helps me as much as he can but also works long hours. My sister and dad's partner/friend help when they can, but, live far away and they just announce when they can help rather than offering to give me planned time out. My uncle (dad's brother) is very supportive too, however, has his own life and family and has said it will be too much for him to cope with if I go away for more than a day.

I want to try and organise a private carer to help me out and I also want to go on holiday with my family in June for two weeks which, at the moment, seems impossible as not only do I have to cover work, find someone to care for our two dogs, but, also make sure that Dad is looked after whilst I am away. I know that I will harbour anger & resentment if this holiday does not happen and I don't want to feel that way.

I know eventually that we will have to find a residential home for him, but, I don't think we are at that stage yet. However, Dad is only managing because of the support that I give and it's becoming too much. Not sure what to do for the best or how to find a suitable private carer. With an agency, there is so much inconsistency and I want to find someone Dad can trust and get on with so it doesn't seem so much like care as he doesn't think that he needs it right now. Am I dreaming of the impossible or has anyone find this healthy (ish) balance? Thanks for reading!

 

[silkiest]

Hi @charlottemc and welcome,
If your dad is self funding you can arrange carers for any length of time that suits you and your dads needs.
There are pros and cons to using an agency. With an agency you don't have to sort out the carers tax, national insurance and pension or arrange cover for sickness and holidays, but you often get less consistency of carers.
When I was looking to start carers recently for my parents I struggled as a lot of the agencies were at capacity. I mentioned a possible agency to my local Admiral nurse who wasn't sure if it was suitable as it was very small. It has turned out to be ideal as it is a small group of experienced carers who mainly arrange for just 2 carers to visit them. If they need to cover sickness etc they basically tell my parents that the new person is working on a trial basis and they would appreciate their feedback as to whether the new person should be taken on full time. Parents love this feeling of being consulted and needed. These carers also don't wear uniforms which suits mum. I can contact carers direct which helps also.
In contrast MIL has an agency that is much bigger and queries have to go to a variety of departments which can be a nuisance. The staff here wear uniforms which is better with MIL as she responds more to "authority figures". She is at a stage in her dementia journey that she doesn't really notice if it is different people coming in so staff can be changed around easily if there is a problem with staff illness etc or with her response to them. With this big agency staff seem to have to travel much more between visits and there seems to be more variation in arrival times.
I think you first need to decide what will suit both your needs as well as your dads, bearing in mind time constraints for you and your dads personality. Please don't forget yourself in all this and get the carers to do as much of the routine care as possible to give yourself time for the rest of your family.
If your area is similar to mine you may find that there is a shortage of available carers. If so you may have to settle for 'good enough' rather than ideal, or you may ned to trial different carers till you find the best fit for you.

 

[charlottemc]

Hi @charlottemc and welcome,
If your dad is self funding you can arrange carers for any length of time that suits you and your dads needs.
There are pros and cons to using an agency. With an agency you don't have to sort out the carers tax, national insurance and pension or arrange cover for sickness and holidays, but you often get less consistency of carers.
When I was looking to start carers recently for my parents I struggled as a lot of the agencies were at capacity. I mentioned a possible agency to my local Admiral nurse who wasn't sure if it was suitable as it was very small. It has turned out to be ideal as it is a small group of experienced carers who mainly arrange for just 2 carers to visit them. If they need to cover sickness etc they basically tell my parents that the new person is working on a trial basis and they would appreciate their feedback as to whether the new person should be taken on full time. Parents love this feeling of being consulted and needed. These carers also don't wear uniforms which suits mum. I can contact carers direct which helps also.
In contrast MIL has an agency that is much bigger and queries have to go to a variety of departments which can be a nuisance. The staff here wear uniforms which is better with MIL as she responds more to "authority figures". She is at a stage in her dementia journey that she doesn't really notice if it is different people coming in so staff can be changed around easily if there is a problem with staff illness etc or with her response to them. With this big agency staff seem to have to travel much more between visits and there seems to be more variation in arrival times.
I think you first need to decide what will suit both your needs as well as your dads, bearing in mind time constraints for you and your dads personality. Please don't forget yourself in all this and get the carers to do as much of the routine care as possible to give yourself time for the rest of your family.
If your area is similar to mine you may find that there is a shortage of available carers. If so you may have to settle for 'good enough' rather than ideal, or you may ned to trial different carers till you find the best fit for you.

Thank you so much for your reply. My Dad is self funding and also in complete denial/unaware that he needs care at all so the conversation is difficult and then not retained so I am at a stage where it's becoming too much and know that I need to make some changes. I have been looking today at options and do worry that if you get a private carer, then, I do not have back up to fall back on if the carer has a sick child one day, for example, or something that comes up that prevents them from getting there. I used an agency when Dad came out of hospital for a month as he was immobile for a while. The domiciliary care was great but my dads routine is so different to the hours they could provide and the live in care was a nightmare because he hated it so much and extremely costly so i ended up cancelling it all with his wishes. It's a comforting feeling finding this forum and I know it will be trial and error for a while. Thanks again and I wish you all the best on your journey too. I will look at carers direct too.

 

[Paul A]

We all have so many similarities with our stories it's uncanny. With the aid of hindsight, I will give you my experience and thoughts, I'm going to be a bit brutal ( Like I wish I had been)

1. Get the finances in order
2. Start looking for rest bite NOW
3. Start accepting he will end up in a home, or make you very stressed and unhappy
4. It's not only about YOU
5. Soon you may not be able to look after him
6. That is not fair on anyone including yourself
7. It will be hard to put him in a home, it really will, but then when things settle down - you can have a life again.

If you go for CGC, get proper legal advice, the LA and NHS want you to fail - they don't want to pay.

 

[Marler19]

Dear @charlottemc - I can only echo what @Paul A has said. You must consider your own life and needs as being as important as your dad’s life and needs. Eventually a care home becomes more or less inevitable but on the journey towards that, one tries everything to keep things afloat. Only you know what your point of no return is. In our case, it was when the police told us mum wasn’t safe at home at all, we knew she wouldn’t accept live-in carers and I knew I couldn’t move in with her as it would have killed me! Two months on from goi g into a home she is warm, safe, well fed, entertained and loves her room, though she still wants to go to her childhood home and see her (long dead) mother. In truth it’s never a happy outcome but please don’t feel you need to sacrifice years of your own life and happiness to Alzheimer’s! My heart broke putting mum in there but I know it’s the best thing. All the best to you!

 

[Hamilton10]

Hello,
I am at the point of trying to decide whether a care home would be the best thing. I just wanted to say that I had a private arrangement with a carer for many years. It some ways it was good as my mum loved her but we had no back up when she was ill (which was a lot) issues such as sick pay and holiday pay were difficult and when I finally went with a private care company it was an enormous relief. I didn't have to agonise about these issues and if someone was off sick they would provide a replacement. I would advise anyone not to do a private care arrangement - it is fraught with problems. Good luck.

 

[Paul A]

My breaking point(s) were:

lack of sleep
my wife breaking down in tears
My son and dogs unhappy
Mum unhappy
And a terrible feeling of dread and unhappiness with a bit of old-fashioned guilt thrown in.

As mum illness has progressed I now can honestly say, she is in the only place that is good for her. We could not offer her the same 24/7 care. That is a fact.

A happy balance has been restored at home.

Don't get me wrong it's really hard to drop them off, but stick with it, it's really the only option for all concerned.

Good luck.

Paul

 

[charlottemc]

We all have so many similarities with our stories it's uncanny. With the aid of hindsight, I will give you my experience and thoughts, I'm going to be a bit brutal ( Like I wish I had been)

1. Get the finances in order
2. Start looking for rest bite NOW
3. Start accepting he will end up in a home, or make you very stressed and unhappy
4. It's not only about YOU
5. Soon you may not be able to look after him
6. That is not fair on anyone including yourself
7. It will be hard to put him in a home, it really will, but then when things settle down - you can have a life again.

If you go for CGC, get proper legal advice, the LA and NHS want you to fail - they don't want to pay.

Thank you Paul. What is CGC? I know you are right on all your points and am slowly beginning to realise. Just so sad and stressful. I wish you well on your journey too.

 

[charlottemc]

Dear @charlottemc - I can only echo what @Paul A has said. You must consider your own life and needs as being as important as your dad’s life and needs. Eventually a care home becomes more or less inevitable but on the journey towards that, one tries everything to keep things afloat. Only you know what your point of no return is. In our case, it was when the police told us mum wasn’t safe at home at all, we knew she wouldn’t accept live-in carers and I knew I couldn’t move in with her as it would have killed me! Two months on from goi g into a home she is warm, safe, well fed, entertained and loves her room, though she still wants to go to her childhood home and see her (long dead) mother. In truth it’s never a happy outcome but please don’t feel you need to sacrifice years of your own life and happiness to Alzheimer’s! My heart broke putting mum in there but I know it’s the best thing. All the best to you!

Thank you for sharing and am really happy for you and your mum that she is settled and you can have peace of mind that she is safe and happy.

 

[charlottemc]

Hello,
I am at the point of trying to decide whether a care home would be the best thing. I just wanted to say that I had a private arrangement with a carer for many years. It some ways it was good as my mum loved her but we had no back up when she was ill (which was a lot) issues such as sick pay and holiday pay were difficult and when I finally went with a private care company it was an enormous relief. I didn't have to agonise about these issues and if someone was off sick they would provide a replacement. I would advise anyone not to do a private care arrangement - it is fraught with problems. Good luck.

Thank you for this. This is the issue isn't it? My dad has a lady who comes and cleans and is experienced with care and has been fantastic lately, however, sometimes she cannot come and it gives me even more jobs to do on top of everything else and if we are trying to plan a holiday the worst thing would be to be let down last minute. An agency is less personal, however, at least there is back up! I wish you well with your decision making and thank you again.

 

[charlottemc]

My breaking point(s) were:

lack of sleep
my wife breaking down in tears
My son and dogs unhappy
Mum unhappy
And a terrible feeling of dread and unhappiness with a bit of old-fashioned guilt thrown in.

As mum illness has progressed I now can honestly say, she is in the only place that is good for her. We could not offer her the same 24/7 care. That is a fact.

A happy balance has been restored at home.

Don't get me wrong it's really hard to drop them off, but stick with it, it's really the only option for all concerned.

Good luck.

Paul

Thank you Paul. I am glad a happy balance has been restored. that seems like a million miles away for us, but, we'll get there.

 

[Starting on a journey]

I am in a similar position. I managed a week away two years ago with my grown up family as one of my daughters friends (an angel) stayed with mum whilst we went away.
Last year I got two days but it was lockdown year.
This year it’s 5 nights on my own (the family are away this week but with no one to look after mum I am not) the family will look after mum but with jobs and babies it is a BIG ask. (They also keep an eye on mother in law in a home)
Next year I need a real break , or even two….mum is self funding and she is going to have to go into a home, probably where mum in law is as it’s lovely. I have been looking after mum for over 7 years, she lives with me so I don’t get much of a break. Dementia is progressive, so what might be ok now would not be in the future.
If you can, sort it out or you will be stuck on the 24/7 grind which is not fun.

 

[Cazcaz]

@charlottemc with respect, another thing to consider is your age/abilities. Can you keep this going 24/7 (If you live together)?

 

[Paul A]

Thank you Paul. What is CGC? I know you are right on all your points and am slowly beginning to realise. Just so sad and stressful. I wish you well on your journey too.

Sorry, it was my typo CHC Continued Health Care!!