26/11/14

We would not have finished from here.

And so, this is how nearly seven years as carers comes to a close. Today we moved X into full time residential care. This is not how we wanted this to end. We believed we would see this through and fulfill the fantasy of both of them dying in their own home.

X however had other ideas and whilst being mentally incapable of very much these days he is physically quite robust. His mother lived into her 90’s and he is 87, we saw an indeterminate future and knew we could not continue to sacrifice our own lives for this.

Over our time as carers we have neglected ourselves, not deliberately, just an inevitability. We have become much less fit, we used to surf, this requires spontaneity something entirely unavailable. Simply going for a quick walk has been nigh on impossible. We had not been to the dentist or optician in 6 years.

We have both felt a sense of failure, mainly that we can no longer meet his every day needs.

This has been the  single most  stressful, emotional and difficult decision of our lives. The vulnerable adult we have cared for so long is now entrusted into the care of strangers. The act of driving him to the home and leaving him, unimaginably tough. 

He will undoubtedly be happy, warm, safe, well fed and cared for. We are left with guilt and a sense of bereavement.

We are giving ourselves a small pat on the back though, we’ve come out of this still together, still mostly sane and with our business still running.

However, after such a long time, we do now have to discover who we were/are. We’ve likened it to PTSD, perhaps over dramatic but this experience has been all pervasive; no parts of our lives left untouched. There are support groups springing up for ex-carers now, much needed I think; imagine being a carer to the exclusion of everything else for 15 years or more, where would you start when that stops? 

Trust me, caring is a tough journey, both mentally and physically, do NOT go into this with your eyes shut.

I’ll do a follow up  post of all the useful things we have learned.

And for anyone who thinks we won’t know what to do with ourselves, we might have one or two ideas ;-)

Finally.... 

We cannot thank enough the family and friends and professionals who have supported us through this. For those who have provided a listening ear and not minded when we talked of little else, you helped us through the bad times. For those who sent us messages of support, cards and gifts. For those that did not mind when we could not attend their wedding, funeral, birthday party etc but did not stop inviting us. For those that stepped up to the plate in  practical way, sitting with X, lending a hand with the house, garden or truck.
We thank you.

Post script 03/12/14
We went to visit X for the first time today. He was clean, safe, warm, well fed and happy. He was entertaining two old ladies just as batty as him. I think we have done a very good thing but accepting this will take time.

A Big River in Egypt

Mostly we are coping ok these days, it’s a little humdrum and we don’t get out much but we are staying sane.  We are using our enforced time at home to do a major amount of tidying and sorting. Jobs that have been put off for years are finally getting done.

On a day to day basis many of our frustrations comes from x and y’s utter state of denial. 

We  have more than a bit of boy scout about us. We are the sort of people who will have a look at what might be coming and prepare ourselves. We carry first aid kits, stash a few spare tins of beans  and keep a box of candles where we can find them. We are happy to research and face up the facts of a situation; it’s how we are and it makes us happy. We accept that ignorance does not stop something uncomfortable from happening.

X and Y on the other hand have adopted the 'blissful' ignorance approach. Neither would face up to their medical conditions and plan or tell us what they wanted us to do or not do for them. 

X was diagnosed with vascular dementia a good few years ago. Apart from attending a few memory classes which he deemed pointless and silly the subject was never brought up. He did and still does think that there is nothing wrong with him. We have had no clues what he wanted long term, what kind of care he would prefer if he got too much for us.

Y was diagnosed with Parkinson’s and refused to read any of the literature, talk frankly with the PD nurse or discuss her future. We did our research, we knew what was likely to happen to her and wanted to make plans for this but were met with a wall of resistance.

The result is that it is now too late to put in a wet room, this would have made showering and personal care simplistic. Everything has been done in a last minute panic when the needs have arisen The kitchen was not adapted so she has to rely on someone else for the simplest of tasks. If she’d been able to keep doing something (even just a bit of washing up) it might have given her a little sense of independence and kept her mobile for a little longer. 

So we now deal with them in an environment less than ideal for someone in a wheelchair and have no idea what care they would like as their conditions worsen. We have no idea if she thinks tube feeding is an acceptable treatment in the future. She doesn’t understand what is happening to her and refuses to take any responsibility for her care and management. This no mans land is uncomfortable for us and often leads us into conflict.

They still refuse to accept their own vulnerability which makes arranging care for them impossible, we cannot force them into accepting help. We worry and they don’t think we need to. We find ourselves making decisions on her behalf in an information vacuum. We carry the responsibility of their current care and the knowledge that it won’t get any easier. 

Please don’t feel sorry for us, this is not what this blog is for...

I’m asking you to be really, really honest with yourselves. If you are going to take on the care of another adult no matter how much you love them now and how obliged you feel to care for them you need to be truthful about who you and they are. You may run into a conflicts that changes how you feel about them and alters your ability to care for them. 

Well it's been a while....

I make no apologies, but I will explain.

Caring is in the most part, very dull and monotonous with the occasional and unexpected high drama.  X and Y continue their slow, sad and inevitable decline, drugs are administered, food is cooked and we protect them as best we can.

The only recent high drama occurred ironically on Father's day when we were alerted at just gone 6am that something was amiss downstairs. In a somewhat bleary state we discover Y on the floor collapsed covered in well.... I'll leave that to your imagination. Y was showered, floors shampooed and disinfected and clothes were washed. The disposable aprons, thick gloves, overshoes and industrial quantities of disinfectant turned this into an almost professional operation. The day was less than celebratory but once we had rehydrated him and given a small pharmacy of Loperamide all was stable again.

It's the uncertainty of when this will occur than can really get to you if you are not looking for it. We are determined to make it through this with our sanity intact so always talk about each incident, letting our frustrations and feelings come into the open. We have had to accept that  attending an event may not happen, that ticket, party or wedding invitation may well go unused. You can prevent that crashing disappointment by working from the perspective that you probably will not be able to go. If you do get to go it's a huge bonus.

I should also mention something common to many carers, spontaneity all but disappears. That quick trip to the shops or beach or cinema is off the cards. Leaving the house becomes a military operation, drugs have to be made up and laid out, food and flasks prepared, panic buttons installed and house locked down.  If the people you are caring for are prepared to have sitters then these sometimes have to be booked a week in advance. Some days you just can't be bothered!

You learn to take your enjoyment quite seriously. Laughing when you can, delighting in the company of good friends and treasuring a walk on the beach.  Parties, gigs and days out become real events that you talk over for days after.


Once again I have to advise that no-one takes on this role with their eyes closed to the changes that will occur in your own life. And, no it is nothing like having children! Kids are mostly fun, you get to watch them grow up, you take photos of them and enjoy their company. Caring is an altogether more serious business (most of the time).

A word or two about fairness.

Two people work hard all their lives, they pay the taxes that their state demands of them. They never claim any state benefits.

Their work allows them to save a little and buy their own home. They live simply, without flash cars and foreign holidays.

When they reach old age and become infirm they need some assistance in their daily lives. They  believe that some of the money they have yielded to the state will be allocated back to them in the form of care.

But no, the state’s agent tells them, you have been wise and frugal and hard working, you must pay your own way. When you have spent all that you have saved we will then think about  helping you; we’ll  value your house first though.

This is the reality of the welfare state, your taxes are taken from you under force and then distributed to those have not paid in, what bit of this is fair?

So, the lesson would seem to be that you should live a feckless and work-shy life or, if you do work, make sure you spend every last penny. Otherwise you will end up paying twice like these two hard working people.

Christmas with the dying

We really sincerely hope you all had a fantastic, fun packed, family Christmas.

We didn't! There were moments of course  and in our own inimitable style we did our best to extract every jot of enjoyment out of it but come Boxing Day we gave in...enough of trying to fulfil someone else's expectations of the festive season.

We are painfully aware that this Christmas may be their last and have made vainglorious attempts to introduce some joy and normalcy.We decorated, shopped, cooked, drank, watched telly, pulled crackers and opened presents. Somehow this was just not enough to make this a happy occasion.

Y is fruitbat,  I mean utterly batshit nowadays and whilst there have been moments of humour they have been frustratingly fleeting. When someone asks you if it's Christmas today for the 8th time the novelty soon wears off.  X is just utterly broken, physically and mentally.

At the traditional Christmas dinner we sat in disposable paper crowns much like the old days but with Y shaking so violently that she can barely get the food (that we have carefully cooked and cut up into small pieces) into her mouth. Her wine no longer from a glass but a cup with a straw and she hates every single tortuous minute of it. Her discomfort is something that she seems to need to share, there are no 'lighter moments'. Joy is completely absent.


X externalises his internal monologue and talks utter nonsense continually.

This white noise now pervades everything and we are finding it increasingly difficult to find escape. Whilst the paid carers have thankfully taken the morning end evening duties we do still have to fill in the rest of the feeding, caring and medicating and take "all" of the emotional burden.  At times I fear for my husbands sanity as he bears witness to  his parents slow and awful  decline towards death and the burden that they have placed upon him both as an only child and as a human being.

Yup, we are all dying, albeit hopefully gradually but watching this painful and slow decline of two once vibrant people is at times utterly unbearable. Their misery is all pervasive.

Our moments of escape and solace came as  a direct result of us renting a beach hut for the week. Not the ideal temperature for a beach hut surely? Au contraire, it was a mini holiday and allowed us to have somewhere away from the familial home to have some fun. Number 3 in our better decisions list.

So I am sorry to bring things down a little, that is not my intent. I would like to hope that you embrace each of your family moments of joy and laughter and truly dance like no-one is watching for they  are not long 'these days of wine and roses'.



Carpe diem.

Quick add on..

From the last post about LPA's...... Radio 4 has just run a feature on people targeting dementia sufferers.

The LPA can also help to protect you from predation by unscrupulous people.

If the person without capacity signs or accepts and contract or service if it be bank, company or individual you can  intervene and on their behalf.

We were able to prevent an inappropriate credit card insurance  from taking place automatically through the bank, without the LPA this would have been a much  more difficult exercise.

LPA's one of our occasional triumphs

 Persuading X and Y that Creating LPA's (Lasting Powers of Attorney) was a good idea transpired to be one of our better decisions.

In short, an LPA is a legal document that allows the  nomination of a  person or persons that you trust to manage your health and/or financial matters for you should you become incapable.

If you should lose your mental capacity temporarily or permanently even your spouse has no legal right to take part in decisions about your medical welfare. If they want to manage your finances they have to jump through some fairly large legal hoops. So even if you are in good health and relatively young it is still a rather sensible thing to do. After all you may be run over by the ubiquitous bus.

For those who are likely to lose the ability to physically and/or mentally manage their affairs through ill health or old age this comes highly recommended. Just don't leave it too late, we nearly did.

For us, the effect of having the power of attorney  has been profound. As X can no longer write cheques and Y loses all understanding of money we have still been able to ensure that the bills have been paid and that we can buy things they need to give them physical comfort. For example, specialist furniture, appropriate wheelchair  and drinking cups that are not available to them from the state. 

When dealing with the medical profession letting them know that an LPA is in place can at times have dramatic effect. Some medical staff are reluctant to discuss a patients condition for fear of breaching data protection/patient confidentiality codes. This is all very well but often we have a more comprehensive knowledge of their recent medical history, mental capacity and medication than any of the doctors and nurses.

Given that Y has dementia I would say that our inclusion in the discussions about treatment and care was fairly essential. Where we have met with staff whose arrogance/jobs worth attitude has excluded us from any discussion or decisions we have  dropped the LPA into the conversation and attitudes suddenly mellow. Someone who has not met Y before may not necessarily know what is in his and the whole families best interests, I would like to hope that we do. We have seen medical professionals ask him direct questions to which he will just reply with the first thing that comes into his head. He cannot remember what happened 5 minutes ago so it's pretty pointless asking him if  he's had any pain in the last week. This has happened on several occasions and our disbelief was just as profound each time.

An example...

Last year Y fainted at home, the ambulance was duly called and he was taken to casualty for the once over. My husband followed and sat with him  helping to  fill in the  'gaps'. It became apparent that there was nothing seriously wrong with Y and given that it was his birthday the next day, it seemed appropriate that he come home. However, the medical establishment were working with a series of prescriptive  protocols and wanted to keep him in for 'tests'. A long discussion with the registrar ensued my husband explaining that under that it was Y's birthday the next day, that he helped to care for his wife and that there were two other fairly fit adults in the house  so surely he could come home. She was reluctant to bend the rules and probably the instructions of her senior. It wasn't until the fact of the LPA was thrown in to the conversation that the atmosphere changed. Suddenly their legal liabilities could be transferred and my husband was able to 'spring him' from the hospital by signing the discharge document. Y came home and was fine and enjoyed another birthday with his wife of 60 years.

So, if you think this is for you there are two options.
1. Go see a solicitor, they will go through the forms with you and witness them and send them off. They usually do this for a flat fee and they do make it straight forward.

2. DIY! This is the option we chose, mainly because we are cheap, we like a challenge and sometimes it's good to understand the law.
You will need a set of forms for each person, there are separate forms for health/welfare and for finance. The forms can be obtained here
http://www.justice.gov.uk/global/forms/opg/lasting-power-of-attorney/index.htm
you can download them but there is masses to print and ordering the paper copies with the guidance notes is actually easier.
Don't be daunted when the postman delivers a veritable slab of paper, just read the notes carefully and work through them. You'll need to find witnesses who have know the person the LPA will apply to for at least 4 years (I think).

Whichever option you choose  think carefully about who will share these responsibilities. You can have as many attorneys as you wish and divide the powers between them .

It may give you a chance to discuss some rather delicate and  uncomfortable issues but this may be the only opportunity you get to ensure that your wishes are carried out. If you were in a coma how would you want to be treated? Do you want your organs donated? In the event that something terrible happens do you wish to be resuscitated? Appointing an attorney may be the only way a person outside the medical profession that may have a say in this.

Without an LPA your spouse may have to get a court order to access your bank account, pay the gas bill or even the mortgage. It really is that important. Getting access to your spouses affairs may be complex but getting access to those of your parents is fraught with even greater problems.

We will certainly be drawing up our own LPA's at some stage. As a relative these simple documents really can make a stressful situation just a little easier.