Elderly parents

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Life is always a compromise. Bits of parental care go well and others could have gone better looking back. Do your best at the time and try and have no regrets! x

Thank you for all the comments and messages of support. For those who said it changes daily, you were very right! For those who shared their own experiences, I thank you and I definitely recognised echoes with my own experience. I know there is no happy ending to this particular story but I will take strength from what you have all shared.

Bez1989 are you currently or have you recently cared for a relative with Alzheimer's? That is praise indeed if you have been/are.

With two US points of view we are looking at this internationally aren't we. I don't see the divide between the USA and the UK but between those who have a way of paying for their own care and those who don't.

My only comment on any 'rules' we are offered is that they all depend, it seems to me, on our elderly parents being compliant. Well done if you got one of those!

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Helen, I think after assessments you will be able to bring in carers to help. Good Luck.

GracesGranMK2 Not sure what impression you got from my post, but mine was that UK has services that are strikingly similar to the US. Perhaps the real difference is on how these services are paid for and where the money comes from. Here in the US, seniors (age 65 plus) rely on Medicare to pay for their healthcare as well as a variety of related services, provided certain preconditions are met. If a senior has financial need and no assets, they can apply for Medicaid, to cover healthcare services that Medicare won't. That includes long term nursing facilities which by law have to provide a predetermined number of 'medicaid' beds.

In the US, we have very good nursing homes and very bad ones (irregardless of cost). Because of the 'medicaid' quotas, some very fine nursing homes are accessible to low income seniors. Some very expensive facilities may look and feel like a 'Four Seasons" hotel, and conditions on the inside can be deplorable. Finding the right one can be daunting.

US insurance companies bear the lion's share of the cost and the premiums are subsidized by the government (from a trust that is funded by a payroll tax or Social Security payroll deduction).

The US healthcare system itself is based on a complicated business model which has advantages as well as disadvantages (hence the ongoing US healthcare debate). I'm sure that your social healthcare is probably just as convoluted, but the services appear to be quite similar.

Regarding nursing homes per se....I'm not as averse to them as you may think....I placed my own mother in a nursing home for six years when she couldn't take care of herself any more and she needed more care than I had the resources to provide.

I struggled with denial and not recognizing that she was no longer capable. The other side of that was my struggle to find alternatives so I could have her near me for as long as possible. Sometimes it's out of our hands.

You have my sympathy Helen as this is a long road ahead of you which many of us have already sadly trodden. I found the 15 points article very good and would definitely recommend following as many as you can. From a practical point the first thing to do as others have said is to get your father assessed. I had help from a local charity which I believe is now defunct but there may be others in your area. Rather than the initial visit to the doctor a lady came out and did this at my parents house (both had dementia but with different symptoms). I don't think either of them realised they were being tested - it's the usual one they do at memory centres - what date is it, can you draw a clock face for me etc. My dad bless him failed miserably on all of them but thought the whole thing was a huge joke and laughed though it - this was to be his response to everything over the next 3 years. The point was though that we were then able to have them referred to the memory clinic where they were properly diagnosed and the help then kicked in. Neither of them wanted it - Mum was especially opposed to anyone coming into their home and doing anything for them apart from me. Luckily I did just live round the corner so as an only child it fell on me and my wonderful husband to do a lot of the caring throughout. We arranged for a private meal delivery service which had been recommended to bring them lunch each day - there was a menu so they were able to choose and the food was lovely. Your father probably wouldn't want to do this - just take it slowly and suggest rather than demand he accepts help. From there we had to arrange for help to get mum in and out of the bath as dad couldn't manage it any more - she hated it but finally agreed and then I found a cleaning lady who was wonderful and got on with them really well. Again it was a case of suggesting it and saying I couldn't do it for them (I work full time but as home so I don't think they realised the demands on my time), Eventually Mum fell and ended up in hospital - social services then stepped in and wouldn't allow her home insisting she had to go into care. It broke my heart as I'd always promised I would never do that to her but I did find a very good place in our town where she stayed for the last 3 years of her life. Dad remained in their home with increasing care packages in place and our care too - I had him here several hours a day while I worked and he was very happy. As you live away this is going to be harder for you to deal with. Are there family friends nearby who could help or neighbours who could keep an eye out for them? My parents had wonderful neighbours who would let me know if there seemed something untoward going on. As dad was still in their home and mum did have some medical issues she was partially funded by the NHS so they didn't have to sell the house. However once dad became too difficult to care for he too ended up in the same home. Due to his problems it was deemed he was eligible to be fully funded but we did have to start paying for mum then and they took a second charge out on their house until we were able to sell it. By this time she was totally incapable of doing anything for herself - had to be hoisted, was totally deaf, unable to speak and doubly incontinent as well as the severe dementia and I had to fight for a year to get full funding for her by the NHS & social services. Dad had passed away by then and the house was finally sold a year later - the same month that mum also passed away. The charge on the property had started to decrease as her funding kicked in but the council still took the remaining balance from the proceeds. I guess we were 'lucky' for want of a better word that this all took place before the new regulations started. I did find the online Alzheimers support forum invaluable at this time - having somewhere to go to read advice from others in the same situation was a big help. It may be that your dad doesn't have dementia - it could be depression from trying to care for your mum but whatever the outcome try to get as much support in place sooner rather than later - it is out there but you have to look for it and often do battle to get it not least trying to persuade your parents they need it! Good luck.

So many people react to the thought of going into a home with horror and continuing stories of dreadful conditions and appalling care in the papers do not help.

I am not denying the horror stories, but there is the other side. I was variously responsible for three relatives who went into care, and their experiences were entirely good. One, once he got there, was so happy in his care home he said he should have done it as soon as his wife died, rather than struggling on at home for several years, deeply depressed and unable to cope.

All my relations were all self-financing, and that makes a tremendous difference, The charges in one care home were mid-low cost the other, high-middle range, so none of them were in luxury high cost homes.

The care was kind and thoughtful, the accommodation comfortable and one home had a large open plan living/dining areas so there were always people moving around, carers interacting with staff and activities in view. A lot to watch even when residents felt too low or were too demented to join in.

Willa are you in the UK. Your world seems nothing like the one I am contending with. There will be no home for my mother unless it is to keep her out of hospital. She cannot afford it and neither can we. She would rather be at home and I would like her to be able to stay there as long as possible. Possible is the word in this though as she is likely to still be there when it is long past possible. That is if she doesn't end up setting fire to it as she insists on cooking her own meals in the oven - they arrive frozen and she has no idea how a microwave works.

Too many people who have little or no hands on care of those with any form of dementia throw out instructions about how others should do it. It is still within living memory - or mine anyway while it lasts - that we were told to bring people back into today, trying to explain what was actually happening, etc. I agree this was wrong but the idea that a relative can become some sort of caring angel, always doing what is right, never, ever having to try and persuade a relative that something they want to do is not a good idea, is equally as wrong and far too much pressure on often elderly carers.

However, that's where we are and for as long as a relative can support a parent or spouse they will be left to do so as far as I can see. If you have money to support this care you will be fine, or at least much better; otherwise they may well outlive you ending up in the home you were trying to keep them out of.

My parents are both gone now, but when they were alive I had the same issues. They did not live near us and eventually they both became unable to take care of their own home and each other.

As parents age, the primary goal should be for the elderly to retain as much independence as possible, for as long as possible.

As things get more difficult, you may want to hire a housekeeper once a week at least, (if they don't already have one.) If cost is an issue siblings may be willing to share the cost and/or help with certain chores such as gardening or laundry. If mom and dad need more personal care, visiting nurses are available and usually come once or twice a week. Adult day care centers can provide much needed social distraction and a place where they are adequately supervised.

Some seniors are cooperative and some can make life very difficult. A nursing home setting should really be for seniors who are mentally incompetent or so incapacitated that a caregiver won't have the necessary resources to care for them properly.

Selling the big old house will probably be your biggest hurdle, Moving them into a smaller place nearby is often a good solution because the older they get the harder it is to maintain a house and the more accidents they have. Ideally, you want them in a place where you can keep an eye on them and they can still manage on their own. Sounds like a tall order, I know, but something to strive for.

For me personally, the nursing home was a last resort. My father died at home and my mother, (progressive vascular dementia) spent her last days in a nursing home. As you can see, each case is different. I hope this helps and I wish you and your parents all the best.

Thank you CHRISPALMER for Brilliant Link !!

DUMDUM
.....yes I thought that too. She obviously lives a distance away.

I think she must have a Family Conference. It's unfair for one person to shoulder the responsibility on their own, no matter how distant emotionally the other family members are.

My husband and are coping quite well at present but we do have a motto....OLD AGE IS A B****R....
AVOID IT IF YOU CAN.

Sorry if that offends....but it can be true.

How can she keep a diary if she only sees them once a month?

I agree with GracesGran's advice - in a similar situation myself and it's imperative that you do get a Carer's Assessment for your father - this will kick start a variety of interventions aimed at helping both your mum and dad. There's no reason why you can't liaise directly with the social worker on a regular basis or with the care agency which is eventually appointed. Carers who come in to take care of the personal issues of washing, dressing, etc., are required to complete documentation after every visit and the care agencies are required to send supervisors to spot check so you can expect the appointed care agency to talk to you, give you regular updates on your mum's situation.

As I was just on my way over to my mother's I could not reply earlier but I was horrified by Monica's comment about diary keeping. Perhaps it is what has to happen but what with that and the "15 Ways to Stay Sane While Caring For an Elderly Parent" I left feeling totally inadequate to care for my 96 year old mother with Alzheimer's. I have been doing this now, to a greater degree each year, for 13 years, six of them with the Alzheimer's diagnosis but apparently we are no longer in a relationship of mother and daughter with all the ups and downs of the years, I am now asked to follow the rules of an employee.

As for your mum and dad Helen, they too have a relationship and that can make it easier and can make it more difficult but it cannot be ignored. He may have mental health problems of his own but he also needs a Carer's assessment. He may well feel completely out of his depth - I know I often do. A Carer's assessment is to help. A mental health assessment - although it may be needed at some point - will not feel as if it is.

I wonder if there are any Day Care Centres near where your parents live, usually run by local authorities. These involve being collected in suitable transport and then spending the day in a supervised environment...having a hot meal at lunchtime ....a few small games, cards, bingo etc. and a light snack in the afternoon before being taken home again. Although this is"nt exactly the answer, it would get them out of the house and the people in charge would also be able to note their needs and keep you up to date. People who attend DCCs come from all walks of life, some in their own homes, some in sheltered housing etc. Your parents would make new friends and the thought of moving out of their own home might not be so scary for them once they socialise as part of a group.

Do you live in England or Scotland? It does vary re coatings, care plans etc. In Scotland, some parts of the care plan is free. Your father needs to be told, perhaps by family or a doctor, that he has choices. Either he accepts careers in at specific times of the day, or his wife goes into residential care. It will get worse and needs to be set up now, cos it can take ages to set up. Good luck.

As this situation deteriorates (and it will, sadly) the first thing social services look into before considering care or nursing homes would be suggesting daily carers for your parents -- could be once, twice, three or four times daily to help with washing, dressing, meals etc.
If this does not work out they recommend residential care of some kind or other.
You say that your father will have no truck with this idea at present -- that could change or he could remain adamantly opposed. But he might change his mind if the alternative was residential care.
It seems to me that daily carers would be a huge help to him once he accepted the idea (they will have to pay for them, though) and if he does come round I suggest you look into private carers rather than SS-listed agencies -- you and he would have more control over who comes and when, even though it will be more expensive.
If it's done through SS it can be rather more haphazard, IME. They use various agencies and there can be problems about missed visits, timings of visits going awry and lack of continuity of care (i.e. lots of different personnel, not seeing the same carers much etc). If you have private arrangements in place you can call the shots much more.
I would do this (arrange private carers) if I had the chance again, sadly I went with the SS agencies and had all the problems listed above with my mother. So that solution failed (and she was also very much opposed to the idea anyway, hated random people calling at, say 11 am to give her breakfast and 6 pm to get her ready for bed etc) so eventually she went into residential care.

Hi try Carers UK they have an excellent advice line and forum
www.carersuk.org/

Brilliant link thank you Chris Palmer

15 Ways to Stay Sane While Caring For an Elderly Parent

One of the most emotionally complex and difficult things a person can experience is taking care of an elderly parent. I recently spent time tending to my aging, widowed father, and thought I’d pass along these 15 points, each of which I found to be significantly helpful during this phase of my own life. (You can read of my experiences taking care of my dad at Mad Dad!) This website is helpful:- www.huffingtonpost.com/john-shore/elderly-parent-caregivers_b_823443.html