What to other distance carers do?

[Sheepteach]

What do other distance carers do?

I have just received a call from the police that Dad has rung 999 to report mum missing - she died 20 years ago. This is the first time for a few months that he has done this.

Over the last week though I have also had several calls from his carers, he has moved/emptied dosset boxes, he has been stressed by the smoke alarm battery warning beep, and also his neighbour rang to say that Dad had knocked on his door saying he had no electricity - so yesterday I did a 60 mile round journey to see whether he needed a light bulb changing or if it was something more serious!

My concern is this - all these issues have been relatively minor, yet his neighbours all elderly professional types have their own lives and there isn't much community spirit between any of them, Dad's brother who only lives 1/2 a mile away is currently unwell himself and trying to get hold of my brother who only lives about 15 minutes away from Dad is nigh on impossible, he also works evenings, so there is no-one available to just pop in and check on Dad before I spend 2 hours driving there and back again.

Do other distance carers have a plan of action for minor issues such as these where quite often all that is needed is a cup of tea and a chat?

 

[benjie]

Hi Sheepteach, does your loved one have carers? Does he have access to any type of Phonelink where they can ring him at certain times each day - this could keep him reassured that someone is available. Also he may be able to leave a message - garbled or not - overnight/at weekends. What about arranging for Age UK or other organisations to call in and sit with him for a while. Anything like this may be a link of reassurance that he may need.

Best of luck, Maureen

 

[Sheepteach]

Hi Sheepteach, does your loved one have carers? Does he have access to any type of Phonelink where they can ring him at certain times each day - this could keep him reassured that someone is available. Also he may be able to leave a message - garbled or not - overnight/at weekends. What about arranging for Age UK or other organisations to call in and sit with him for a while. Anything like this may be a link of reassurance that he may need.

Best of luck, Maureen

Hi, yes Dad has Carers three times a day to help with personal care (that's another story) meals and medication. I visit twice a week, my brother once a week and my Uncle once a week when he is well! So he is not short of visitors! We tried the Phone link just after he was diagnosed three years ago but he kept unplugging it! Also he is deaf so very hard to communicate with him over the phone.

I just find it very frustrating that there doesn't seem to be anyone I can call on at short notice for minor problems, or just to reassure Dad.

 

[Hair Twiddler]

....so yesterday I did a 60 mile round journey to see whether he needed a light bulb changing or if it was something more serious!

Do other distance carers have a plan of action for minor issues such as these

There's the rub (as I see it).
Three years ago mum came to live with us. I had spent too many days/nights over the previous several years jumping into the car, driving 109 miles, attending to the minor issue, staying over and then driving 109 miles home back to small children, husband and a career.

The 'best' minor issues included mum pressing the "menu" button on her TV and not being able to escape back to Richard and Judy (I kid you not) was incandescent with rage at me for "leaving her in this mess".
My plan of action was to be a successful, superwoman "mobile facilitator" - it became impossible to sustain and because mum had long been desperate to come and live with us, eventually so she did.

The distance may have diminished but, believe me, the stresses & strains have gone ballistic at times.

 

[Sheepteach]

Hair Twiddler, I can quite believe it! I am in a similar situation, four teenagers, and a self-employed music teacher, mustn't forget OH too! We always said that if any of our parents became infirm that we would have them with us, but the practicalities would be an absolute nightmare. Plus, I'm not sure they's want to put up with us - especially the aspiring rock drummer son!!!

Seriously though, whichever path we choose we seem to be damned if we do or damned if we don't!

 

[Hair Twiddler]

Hiya Sheepteach,
Yep, damned if you do and damned if you don't.
Sometimes I really wish I'd opted for the latter damnation.
Keep in touch.
Best wishes - Twiddler x

 

[ITBookworm]

I'm afraid I can't help with the long distance care bit but.....

B&Q and other similar shops do small safes - around A4 size inside that aren't excessively expensive (~£30 from memory). Could you get one with a digital lock to put Dad's dosette boxes in? The carers would know the number but Dad wouldn't so couldn't tamper with his medication.

We got one for FIL for exactly that reason and expected WW3 when we put it on the kitchen counter with his pills in. Amazingly enough he didn't seem to try and get into it and was almost reassured It ended up he wouldn't accept his pills from us after that.

Good luck.

 

[jstmcm]

I know exactly how you feel. I live more than 2 hours drive from my Mum, who lives alone, and my brother is over 3 hours away. We had a careline alarm fitted, but Mum doesn't understand it - has pressed it several times by accident but didn't press it when she actually had a fall and was badly injured. For the Careline we had to come up with emergency contacts who were local, which was really hard because there is no-one else in the family, all Mum's friends are either dead or ancient and infirm themselves, and the neighbours were either new and we didn't know them or equally old and frail. However, we did in the end come up with 3 names, one a lovely old schoolfriend of mine who lives locally and 2 other people who work locally although they live 30 minutes drive away. But whenever there was a problem, I still ended up dashing down. Recently I decided I had to get to know the new neighbours so that I could ask them to pop over if there was something that needed checking out, and we had just reached the point of them agreeing to do that when it became irrelevant because Mum needs 24 hour care now. It felt uncomfortable asking virtual strangers (albeit they seem very nice) and we were taking quite a risk as we hardly know them, but there just didn't seem to be any other choice, we were desperate to have someone we could ring who could go over and just check whether she had left the phone off the hook or unplugged the careline (which she did several times) etc etc.

I and my brother are alternating staying with Mum until we get something permanent set up, but we can only do that because he is retired and my work is part-time and flexible, and I carry on working on my laptop at Mum's house while my very patient husband holds the fort and cares for our autistic son. (Luckily his care needs are not great or it would be impossible.)

While looking for 24 hour live in care I have found an agency which will provide 24 hour call-outs. I haven't looked into the price because we don't need it now, but I wish I had known about it earlier. The agency who provided the carers who used to call in didn't do emergency cover, although I have to say they were wonderful when we did have an emergency and couldn't reach our contacts and they found a carer to go round.

J

 

[Chemmy]

I was a distance carer too but fortunate to have a cousin who lived 100yds away from my mum and, without her input, Mum would have had to go into the CH much earlier. She drove them nuts at times, tbh, but I am eternally grateful for their help.

However, personally, I think it is unreasonable for anyone to expect neighbours to step in unless it's a real emergency. My mum had great neighbours but they soon began to realise that if they were too accommodating, she would be round all the time and they rightly had to set some boundaries, which I know included not answering the door if they saw her coming. They weren't being deliberately unkind, just preserving their own sanity.

So you are faced with the decision of when 24/7 supervision (as opposed to nursing care) is required. My MIL has early signs of VasD but has capacity to understand her situation. She moved into residential care in May because living alone was dangerous (falls) and she was malnourished and lonely. She was adamant before, when the subject was broached, that she didn't want to move into a CH, but in fact, she now acknowledges that it is by far the best solution. She has settled in well, is putting on weight and has a far better quality of life than when she was supposedly 'independent'.

Those with more advanced dementia may not be able to understand why such decisions are made on their behalf or acknowledge that moving into care has improved their life; all I can say is that in the case of my mum and MIL, it's a decision I wish we'd made sooner.

 

[Oxy]

Distance caring only works to a point. There are community alarms (buttons), the telephone, dossett boxes, key safe etc. caring at a distance is very stressful as you are always on alert, going down for slightest worry. Impact on career also needs to be thought through.
My personal sentiment is that there comes a point where full time care is needed, be it by loved one or in a CH. It is the kindest thing we can do for our loved ones. Hanging on to stay In own home at the expense of safety and human contact is not the best for anyone.
I think the idea of four or three carers going in to wash and feed ina rushed way (15 minutes!) is not good for the patient and the loneliness compounds fears etc. I was appalled by a TV program where a poor woman was left in bed all day with four short visits. Result she resorted to 999 too much for what appear as minor things but if you can't move much....
These are my personal views only. Too often the authorities think money rather than CARE in the true sense of the word.
Happiness and contentment is best achieved with a regular routine. Diet is also important. When alone they have to rely on ready cooked food which is never as nutritious as 'cooked from scratch'. If a carer comes in and there is a washing refusal, there is no one there to catch a better moment later, giving greater chance of UTI which presents its own problems eg possible decline, falls hence risk of breakages etc. With 24/7 care in whatever setting, they can opt when to sleep and get up etc. no 2 days are alike.
Hope this will help you in your decision making process. It is so hard and if we don't think ahead we end up having to make decisions without time to reflect. It is usually a crisis that forces a rushed decision.

 

[Chemmy]

I think the idea of four or three carers going in to wash and feed ina rushed way (15 minutes!) is not good for the patient and the loneliness compounds fears etc. I was appalled by a TV program where a poor woman was left in bed all day with four short visits. Result she resorted to 999 too much for what appear as minor things but if you can't move much....
These are my personal views only. Too often the authorities think money rather than CARE in the true sense of the word.
Happiness and contentment is best achieved with a regular routine. Diet is also important. When alone they have to rely on ready cooked food which is never as nutritious as 'cooked from scratch'. If a carer comes in and there is a washing refusal, there is no one there to catch a better moment later, giving greater chance of UTI which presents its own problems eg possible decline, falls hence risk of breakages etc. With 24/7 care in whatever setting, they can opt when to sleep and get up etc. no 2 days are alike.
Hope this will help you in your decision making process. It is so hard and if we don't think ahead we end up having to make decisions without time to reflect. It is usually a crisis that forces a rushed decision.

That was an excellent series on BBC- Protecting our Parents. It's not on iPlayer but clips are available here

http://www.bbc.co.uk/programmes/b041mq9q

Well worth a watch. It made me angry that so-called 'maintaining independence' can be in fact be a recipe for loneliness, fear and neglect.

 

[Witzend]

That was an excellent series on BBC- Protecting our Parents. It's not on iPlayer but clips are available here

http://www.bbc.co.uk/programmes/b041mq9q

Well worth a watch. It made me angry that so-called 'maintaining independence' can be in fact be a recipe for loneliness, fear and neglect.

Often a euphemism for 'we don't want to spend the money', from all I see and hear.

One thing that made me mad, but did not particularly surprise me from that programme, was the way a SW spoke to a lady with dementia. He was using a fair bit of SW jargon-speak and could not apparently see or understand that the poor lady had hardly a clue what he was talking about. I don't know whether it was deliberate - i.e. he wanted her to agree to whatever it was whether she understood or not - or whether he was just none too bright in the 'communication skills' department. I rather suspect the latter.

 

[Oxy]

3rd time lucky I hope trouble with connection. Chemmy I totally agree with your last sentence.
Dementia is unpredictable. Who would notice the one off night sortie? If frightened at night due to personal circumstances or otherwise who would be there to comfort back to sleep?
I would only ever advocate 24/7 in whatever setting except 24/7at home by paid carers. Too unpredictable. Also a while back an agency was raided and no LA person bothered to check that all patients on register were catered for and a lady was found dead days later. How scared she must have been!

 

[Chemmy]

My MIL had paid carers letting themselves in for the two weeks between hospital admissions and she told us afterwards that she felt physically sick when she heard someone putting the key in the door as she had no idea if it was going to be a carer she'd met or a complete stranger. She much prefers the regular staff and familiar faces in the CH setting. In fact it was the thought of having to have carers coming in again which convinced her to give the CH a try.

We were lucky that she was able to express her feelings to us about such issues; that is not always possible if the person has dementia, but if someone is of a nervous disposition or seems anxious, perhaps that is something that should be considered. MIL knew they were carers and was still upset. Imagine how it must feel if you can't remember who these people are, letting themselves into your home and then trying to assist you with personal hygiene.

 

[loveahug]

Mum is in an assessment unit at the moment after yet another fall. They have said she is too able for a care home as it's only the falls which are the problem. LA is arranging a bed sensor which auto alerts if she's out of bed for more than 20 minutes between 10pm and 8am. also a falls sensor for the day which she wears round her waist. If she does not respond to them appropriately then their response team visits. This is such a relief for us, who all live far away. It now remains to see if she unplugs the contact unit or cuts off the waist belt! We can but try

 

[Pickles53]

Mum is in an assessment unit at the moment after yet another fall. They have said she is too able for a care home as it's only the falls which are the problem. LA is arranging a bed sensor which auto alerts if she's out of bed for more than 20 minutes between 10pm and 8am. also a falls sensor for the day which she wears round her waist. If she does not respond to them appropriately then their response team visits. This is such a relief for us, who all live far away. It now remains to see if she unplugs the contact unit or cuts off the waist belt! We can but try

Loves hug, I hope this works for your mum. A waist sensor may work differently to a wrist falls sensor which did not trigger when my mum fell back in July. As she could not remember to press the alarm button either, she was lying in the bathroom floor for several hours and was found by the morning carer coming in for her scheduled visit.

I asked the Carelink folk afterwards why they thought the alarm hadn't triggered and they said that if she 'slid' down or something rather than falling hard the sensor might not have hit the floor hard enough to trigger. So I would ask about how your mum's sensor works if you don't already have all the details. Also I think there should still be regular checks that she is OK.

Don't mean to sound patronising but I think I was too naive/optimistic about the effectiveness of technology-based solutions at the time.

Incidentally this fall was in the end the trigger for my mum to move to a care home near us, and when the crunch came I was so relieved that I had researched the options in advance. She's not happy there but it is abundantly clear to me that she would simply not be safe with any home-visit-care based system.

 

[loveahug]

Thanks for your comments Pickles. There are carers foour times a day so we are prepared to give it a go as Mum is so desperate to go home. All these things are a balancing act so we are prepared to be proven wrong.... If this fails, there won't be an option, she will need full time care, but she has enough cognition to know where she is and we are convinced the distress will kill her, she's 90 and has a good few years in her yet. It's that rock and hard place again!

 

[Lancashirelady]

There is only so much anyone can do and stay sane. My Mum has lived alone for the last 18 months since Dad died. She hates "not having anyone to talk to" now that he's not there. I felt desperately sorry for Dad, who had a brain tumour and couldn;t really communicate for the last few months of his life,as he had to sit in his chair and listen to Mum repeating the same thing over and over. I drive 80miles each way to see Mum twice a week, she has other family visitors,goes to day centres twice a week and has carers twice a day but nothing is ever enough. Luckily, Mum is physically quite fit so we don't have to worry about falls, touch wood, it;'s just (just!)the loneliness and vulnerability. I know that Mum really wants to come and live me with but I think I would be in a straitjacket within a fortnight and/or my OH would leave home. I try to relieve the guilt by reminding myself that 10 minutes after I've left her she's forgotten I've been but it's always with you....Today is my birthday and this is the first year she has forgotten. Now who''s feeling sorry for themself!

 

[garnuft]

My mam wouldn't have known she needed help if there was an ambulance man, a doctor or a nurse in front of her.

She had telecare, pendant and bracelet...never used it, would never use it, when she was in the full throes of dementia, she always thought she was fine. It was a false security.

People presence is the only answer.

It's a bitter pill to swallow, this I know.

 

[Pickles53]

There is only so much anyone can do and stay sane. My Mum has lived alone for the last 18 months since Dad died. She hates "not having anyone to talk to" now that he's not there. I felt desperately sorry for Dad, who had a brain tumour and couldn;t really communicate for the last few months of his life,as he had to sit in his chair and listen to Mum repeating the same thing over and over. I drive 80miles each way to see Mum twice a week, she has other family visitors,goes to day centres twice a week and has carers twice a day but nothing is ever enough. Luckily, Mum is physically quite fit so we don't have to worry about falls, touch wood, it;'s just (just!)the loneliness and vulnerability. I know that Mum really wants to come and live me with but I think I would be in a straitjacket within a fortnight and/or my OH would leave home. I try to relieve the guilt by reminding myself that 10 minutes after I've left her she's forgotten I've been but it's always with you....Today is my birthday and this is the first year she has forgotten. Now who''s feeling sorry for themself!

That guilt monster is always lurking and needs a sharp slap sometimes. Mum couldn't have lived with us as she couldn't manage stairs and no way to adapt the house, but even if it had been possible, I don't think it would have worked for either of us. We lived a similar distance away and I could have driven the route blindfold.

All through this year I wrote birthday cards from mum to everyone else and I knew she wouldn't remember mine, but it was still sad when the day came and went without a word. Hope you were able to enjoy the day still.