Family Matters

[Wendyf]

Sorry Tiz, I missed your edits to that post and was still waiting to find out if your mother in law had arrived home.

[Tizer]

They have got a bit buried Wendy! The situation is still very much as in that last edit - she's at home and we are waiting to see how it goes. So far no more falls, thank goodness. They are tired due to all the carers coming and going. Mrs Tiz is there with them as I write - her sister can't help at the moment, she's just got married for the 2nd time and is sunning herself on Waikiki beach in Hawaii! She deserves it, having done all the preliminary work sorting out mum and dad before she went. When sister comes back I hope she won't try to spend too much time with mum and dad - her new husband got to know her before all this started and it could be tricky if they come back and he finds she now spends all her time caring for the oldies. There's got to be a balance. I really wish mum & dad would go into some kind of good quality communal care, I'm sure it would be much better for them, more secure and would allow dad (the mobile one) to get out and not feel he can't leave mum, while mum would have all the care available on site. But if they don't want it...

[Wendyf]

I know how you feel Tiz. My brother & I have been spending our weekends visiting Mum since Dad died over 10 years ago. We look after her finances, deal with the house etc. and every day without fail for 10 years she has phoned me twice a day at 8.30am and 6pm. I'm not really complaining, it's not a huge burden, but some times I just get a bit weary of always having to be on call. I have suggested that now there is a carer going in every morning that she could just phone at 6pm....but no, she needs to know that I am all right! Big Bro has just set off on a trek to Everest Base Camp, so that's him out of the picture for nearly three weeks....I'm hoping to have 3 nights away myself but Mum ain't going to be too happy about that!

[Stanley]

Looking from the outside whilst recognising that you all want to do your best for your dependants I can't help detecting a degree of tyranny in the demands placed on you all. Tiz mentioned the balance in connection with the newly-weds. This could apply to all of you. When does doing what is best all round kick in? You are not going to look for a handy ice flow but sooner or later realities have to be faced and it's a matter of the damage done in the interim. I sympathise with all of you, perhaps I'm too logical, or perhaps insensitive. If so I apologise.

[Tizer]

It's complicated by the fact that what's `best all round' is a subjective decision. Also, complicated because the `young ' are themselves becoming the `old', in more ways than one. As longevity increases, the sons and daughters trying to help their elder parents are themselves of a greater age and will end up needing assistance for their own age-related disabilities! In several ways I'm less able than my 94-year-old father even though I'm only in my 60s.

Mrs Tiz reports that the carers appear to be good and are generally doing their best, although the circumstances of `care in the home' leads to all sorts of problems, for example the carers can't be familiar with the details and idiosyncrasies of everyone's home and that can mean things done wrong, omitted or messed up, even though it's not really the carer's fault. Mum & dad described one carer as `treating us like dirt' but we wonder if that's a fair assessment - mum has been shouting at all the carers and sometimes refuses to cooperate, so perhaps that one stood up to her! It seems mum is in denial of the serious problems that she now has.

[Sue]

Tiz it all sounds so familiar. My mum never got to grips with carers. My dad made cutting comments about 'Asians' and wouldn't t give them shopping lists because he said they would just bring him curry. It was so embarrassing , his carers were all so nice. we used to exchange recipes!

[Stanley]

There are flashes of saintly patience in here! Thank God they are about.

[Tizer]

Mrs Tiz managed to contact mum's `community matron' twice yesterday - all done over 140 miles on the phone - and learnt a lot more. A Chinese-sounding lady who was very helpful and guided us on what we need to buy for mum and where to get it. I was surprised that she knew so much about mum, she must have lots of `customers' to deal with.

[Stanley]

Here's a cheerful family matter for you. As many of you know I am officially living in poverty as I only have my state pension and a small private pension. However, I tailor my coat to fit the cloth and by avoiding the food processors and the pubs I manage to save money. Every now and then I declare a dividend and give my three daughters a small wedge of cash, not much but enough to be useful. They love it of course but I love it even more, even though I am poor and knackered I can massage my self-esteem by being useful and giving my daughters pleasure. A pleasing family matter.....

[EileenDavid]

Stanley you are a big softy but if it gives you pleasure why not. When I first started work my mam was always treating me so when I was older I reversed the role and started to treat her. Nothing mega a few clothes here but a real treat was she loved pineapple but said it was far to expensive so when they were in season I used to buy them for her. Her face would light up and there was no guilt has she hadn't bought it. Wish she was still here. Eileen

[Tizer]

That's interesting Eileen...our parents get great enjoyment from receiving small things that they won't or don't buy for themselves, often because they see them as a bit extravagant or they simply forget to buy them! Sweets for my dad, those little juicy tomatoes for Mrs Tiz's parents. Mind you, I'm, as bad...just buy me jelly babies and I'm in heaven!

[Stanley]

A bit of nice goes a long way.......

[EileenDavid]

Your easily pleased Tiz, Dave's mum Ruth was also a sucker for Jelly Babies ate a full kilo box in a day wonder she wasn't sick. after that we left them in the office at the home and they broke them down and fed her them in portions. You are right in what you said about extravagance another indulgence one of my brothers used to get for my mam was a quarter of cashew nuts. Had to get them and give her them in two ounce packets as she couldn't stop eating them. Eileen

[Wendyf]

Mum seems to be getting used to having a carer coming in each day, which is a relief. She has been given an appointment in the endoscopy department at Leeds Infirmary for investigations, but she is refusing to go and, to be honest, I think she is right to do so. It seems to me that there needs to be a complete rethink by the NHS on it's care policy for the very elderly.

[Stanley]

Any sort of endoscopy can be traumatic. I think I'd refuse. I haven't forgotten my kidney episode yet!

[EileenDavid]

I agree about the rethink on these traumatic investigations but having said that having a barium enenama saved my life but I was only 50 at the time and was the worse experience I ever had. Dave's mum had to go for some tests and played up all the time with Dave & myself when she got there she was as nice as pie to the nurses. Turning on the tears for effect, painted us as real villans. Eileen

[Whyperion]

I think mum was 78 when she had an endoscopy , she actually took it quite well , considering. ( they did the minor cut out at the same time and she spent three days in hospital in total ).

[Tizer]

It's all about trying to find the right balance again. My mum was in her early 80s, had suffered several strokes and heart attacks and had lung problems - we were trying to get her an oxygen bottle at home but that's more difficult than you'd think, due to bureaucracy. She then had a hospital visit where she was seen by a gerontologist who examined her, found a lump on her breast and wanted her in for scans etc. She was frightened and didn't want to go and she was at a stage where attending hospital meant going in an ambulance, travelling in a car wasn't a safe option. We agreed with her and said no to the gerontologist, leave her be. She died from stroke soon afterwards. We never did manage to get the oxygen bottle.

[Stanley]

Wasn't there some problem over changing the way oxygen was delivered to medical users? I seem to remember a lot in PE on that subject.

[Tizer]

We were told that a GP could not arrange it - mum would have to go, yet again, to hospital for an assessment. But we couldn't take her to hospital because she could hardly breathe! Catch 22.

[Tripps]

Anyone in this sort of situation will come to have a deep hatred of the word "assessment".

[Sue]

My friends husband, who has now died, had serious emphysema and needed an oxygen bottle but needed to be assessed. When the assessment came through he was unable to attend because he could not walk the distance from the car park to the clinic. I can't remember exactly what happened. He did eventually get his oxygen after a long battle.

[Marilyn]

Oxygen therapy can be exceedingly dangerous and difficult to supervise in the home situation....it can actually make a person more sick and can be fatal.
The rest of us don't breathe oxygen...we breathe air.
Our brains control our oxygen intake, which is why we puff when we run and breathe normally when we rest. To override this mechanism is not a good idea in the long term, but can provide relief palliatively.
Have you ever woken from an operation to find an oxygen mask on your face? And is it not whipped off pretty quickly once you become aware of it? That is because your own brain can take it from here. To leave it on would kill your own ability to maintain breathing, especially in older persons who have a less effective cardio system.
People who live in high altitudes have adapted to the rarity of oxygen. We go there and feel totally exhausted for several days until we adapt...but our bodies are wonderful things and can adapt.

Oxygen is also extremely explosive....in the home situation there are naked flames/friction/static that can cause problems.

All I am saying is that while a patient may feel oxygen would assist them, there may be other overriding concerns that cancel it out. It is not just a matter of a medical person being mean..

[Stanley]

All very true and sensible Maz but if your lungs are damaged?

[Marilyn]

Yes, it is a delicate situation with lung damage...but the only thing that keeps us breathing is our brain's response to CO2 levels. Give a person pure oxygen and it cancels out the CO2 recognition in our brains. In reality, people with compromised lungs can actually stop breathing altogether if given too high a dose of oxygen.
Think of people who have hyperventilated and 'blown off' their normal CO2 levels....hysteria sets in. They used to recommend rebreathing from a paper bag to get CO2 back to normal levels. Too much CO2 and we die. Too much oxygen and we can too.
And the risk increases with elderly patients.
That is why oxygen is treated like any other drug ordered for a patient.

When it comes to an elderly person being breathless, the best thing is to take things very slowly and reduce their stress levels. Try not to rush them and allow plenty of time to get to and from appointments. Discuss the relationship between breathlessness and stress and emphasise that they need to control their breathing. In many cases it is more a matter of over anxiety.