2022 Quick Daily Posts

[Serinde]

Richard, I'm so sorry you are dealing with this. Having some experience with family and friends who have either had dementia of various forms or cared for family members with dementia, I have a little understanding of how gruelling an experience it can be. Sounds like your poor MIL has just about had enough, but the ambulance people need to do what they need to do. I presume she's still in hospital -- some sort of infection on top of all else? As for FIL. Well, leopards and spots is about the kindest thing I can say. But Cliff will be missed, and what a gift and grace it is that Tracy can be the verger for his funeral.

[wendywombat]

My heart goes out to you yet again Richard and Tracy.
I hope that your dear MIL will receive the proper care and attention she clearly needs.

I have recently been involved on the later stages of dementia with my late father. He was, thankfully for me, placed in a suitable care home as I was still living in France. He was aggressive and difficult towards me at times but from the sound of it nothing like the sad situation that you are going through.

It never ceased to amaze me how different Dementia affects it's sufferers in later stages whilst I was nursing and also still astounds me that you are still having to cope with with your FIL at home when he clearly needs much more specialised, FULL TIME help in a care facility.
Both you and Tracy have been coping with this far too long and it cannot be doing either of you any good.

Do take care of each other as I'm sure that you already do!

[richardandtracy]

We know he needs full time care, but, and it's a big but, the people in authority (doctors & the like) speak to him for 2-3 minutes or less & come to the conclusion he has enough 'capacity' to mean that he can't be forced against his will into a home if he says 'No'. And he does. Repeatedly, adamantly and violently.

What is so frustrating is that he makes an effort for 2 to 3 minutes when someone new talks to him, which he can't sustain beyond those 2-3 minutes. But as that is the full time the doctors are prepared to give him, they don't see him beyond the 2-3 minutes. And by 'see', I don't mean physically see, I mean talk over the phone. The last doctor he saw in person was when he was last in hospital over the new year. Since then his dementure diagnosis was done over the phone and seem to have been largely based on MRI scans taken in January which were compared with ones taken 3 years ago (considerable loss of brain matter between the two). He's had a phone consultation with the area mental health practitioner and been physically seen by the District Nurse twice a week. His GP reluctantly, unbelievably reluctantly, sends a paramedic out when the District Nurse gets annoyed enough to demand something more than a nurse, but being seen physically by a doctor.. not since when in hospital in January.

Did I mention that he's housebound and gets horrifically anxious days before if he goes out to an appointment? The last time I took him to an appointment (2 years ago, during covid), he decided that we'd arrived back home while I was still driving at 30 mph, unbuckled his seat belt and started to open the door. I was lucky (or not, maybe ) to restrain him and not crash at the same time. He is simply too big and his legs don't bend enough to fit in the back seats where we can use the child locks, and I'd feel unsafe with him behind me.

Ahh well. C'est la vie.

Regards,

Richard

[mags]

A very difficult situation for you both Richard. You have my utmost sympathy.

[Steam.Jo]

You have my sympathy Richard,

I wonder what would happen to people with dementia who do not have caring children looking out for them when they get to the troubling stage in life.

Jo

[rcperryls]

In the last years of my father's life, his medical problems kept him pretty much in bed, but he was able to move slowly. My step mother took care of him and eventually they were able to get an aid to come daily to help with him. He complained but not like anything you have been going through Richard. I was able to go there several times a year (they lived in Florida which is about 6oo miles from me)so my step mother could get away to visit family (and get a break). I cannot imagine what my sister and I would have done without her. By contrast, a good friend of mine's husband suffers from dementia and she is the only caregiver (they recently got an aid to come twice a week to give her a break). Both are in their 80's but she is in good health. His daughters are both retired, live in New York, and have visited once in the last 5 (or more) years. They were here for a week, saw him for an hour a day, spent the rest of the time enjoying the city of Charleston. I so admire you and Tracey for being the kind of people you are. I hope the hospital will keep your MIL as long as she needs to be there. I can somewhat imagine the stress you both are under and you have my sympathy and empathy as you keep dealing with this situation.

Carole

[richardandtracy]

Thank you all for your support.

I must admit at the moment we don't feel under the pressure we were at the beginning of the year, but FIL is obviously going down hill. We don't know how much longer he can stay at home with only 3 hours help a day. Suspect it's not too much longer, measured in months rather than years.

Carole, I am so sorry to hear about your dad, must have been horrible.
My dad lives 250 miles from me (about 6 hours drive on a normal days drive or 5 hours if I leave at 5am). The blessing is that he's fit & well at 91 and we have an hour phone call every week - something I've done since age 13 whenever not living with my parents. Keeps us close.

Regards,

Richard

[richardandtracy]

We finally got news about MIL.
She's going to be kept in hospital for at least 48hrs of continuous monitoring. That is good news, as it means she's going to have someone actually look at what her heart is doing and make fact based decisions rather than reactive 'Oh, she's chatty and alert, send her home.' type decisions.

Regards,

Richard.

[Serinde]

How's MIL? Glad they have had her under observation. Re "chatty and alert": we are our own worst enemies sometimes.

[richardandtracy]

We've been to visit her, and she appeared well.
But the monitoring next to her told a different story. Heart trace & pulse looked OK (to my untutored eye), but one other trace, which I think was blood pressure from a continuous monitor, was all over the place. On a few occasions it matched her heart trace and looked like a nice healthy sinusoidal trace. Then at times it maxed out as high as the machine could cope with, and other points it flat lined at zero. To my eyes it looked a very unhappy trace.
She should be being assessed again today. We can hope she's OK, but if I saw a machine behaving that erratically, I'd want to know why.

Regards,

Richard

[richardandtracy]

Today, we've been unable to get through to the hospital wards about MIL (5 calls relating to her rang out on the ward). And the hospital hasn't phoned us.

But FIL had 2 ambulances come to deal with him after he fell over, hit his head, gave himself concussion poured blood over the carpet, gouged a hole in his back and smacked his chin open. His carer saw it happen, when he went into the living room when he should have been going into the bathroom for a wash (which he hates, preferring to stink instead, and given that he soils himself and his bed nightly, he does stink). Tracy went round when his carer called, and stayed for the ambulances to come, and stayed to lock up and secure the place before having to go to work. He is now in A&E. We think. We assume. We've made 6 phone calls, 4 rang out in A&E and two never got answered at the hospital reception. Not one back from the hospital. What the flipping heck do we need to do to get information out of this catastrophe of a hospital?

Tracy is at her wit's end.

Regards,

Richard.

[Serinde]

May I make an observation? FIL isn't fit to be on his own, even with good carers. Something everyone probably knows perfectly well (except FIL, inevitably). My heart goes out to all of you.

Chronic understaffing in your local hospital might be one of the issues -- there's no one with the free hands to man the phones? But it must be such a worry for you, and I can believe that Tracy is at her wit's end. (By this stage, the path to her wit's end is probably a very short and well trodden one, and a'.) He must have been admitted last night, surely.

[Steam.Jo]

I know it is difficult Richard but have patience. The hospital will contact you if there is anything you need to know. They are in good hands so you need to let them do their job. When either of them are ready to come out they will contact you - the hospital needs the beds.

I have friends who work in the hospitals: they are understaffed, over worked and at their wits end (and leaving due to burn out). If they are talking to you on the phone then they are not helping the patients, even the receptionist who answers the phone should be finding beds for people within the hospital to lessen the wait time for those who need to be in A&E or chasing for things that the Nurses and doctors do not have the time to do.

If you wish to rant at someone then do it to your member of parliament and tell them what you think of the service but please be kind to the NHS staff, none of this is their fault.

Jo

[richardandtracy]

We are not going to be anything other than polite to the staff. I know many of them are working flat out.

I won't say 'all' because I have been to that hospital (and I don't extend my observations to any other hospitals locally that are not in 'special measures' due to management, infection control & care standards - though I can't think of which one that might be in practice, as all big hospitals locally are in 'special measures' for something) and spent many hours hanging around waiting for MIL & FIL to be dealt with and I have observed what the staff do. In each service department we've been to (Phlebotomy, Imaging, ENT, Oncology & Cardiology ) there is at least one person being carried by the rest and there are two who zoom around like dervishes making up for the one being carried. FIL used to be hugely anxious about his appointments so we always arrived at least 90 minutes early to soothe him. That gave masses of time to see who were the floater's and do-ers. And on repeat visits it was always the same floater. On three visits to the oncology department (FIL had a skin tumor on an eyelid) the floater went into each consulting room and moved a few things, moved them back & floated to the next room. On one visit the Consultant was furious when she arrived an hour late due to traffic & found that none of the consulting rooms had been prepared, despite the fact I'd seen the floater spend 8-10 minutes in each room doing... nothing much useful at all, as it turned out, certainly not prepare them for the consultant. Same thing with plebotomy. There was one woman who shuffled about carrying a clipboard, talked to all hospital staff who wandered through, ignored the patients, and for all of the two hours I saw her each time she was carrying the same piece of paper with three signatures on it (black, red, black ink). No change of paper, never given to anyone, never did anything other than chat.

We have a floater where I work; it is possible to get to know the symptoms...

However, that's not to denigrate those who do work flat out. I just feel there'd be less pressure on those who do the work if the hospital management put a rocket where it'd be most use on the floaters and get them to do their jobs and help reduce the load on the flat out ones. Did I mention the hospital was in special measures due to 'Management Failings' amongst other things?

Rant at our MP? That's a laugh. I have found 4 entries for our MP in Hansard for the parliament since the last election. Three of those were references to him, and the fourth was a paragraph's worth of speech he gave in Westminster Hall, so not even in the House. By my calculations he has been paid £3000 per word for that speech since 2019. I think our MP can be described as 'Missing, without Action' or maybe 'Missing, without Trace'.

Regards,

Richard

[rcperryls]

Richard, I can hardly believe what you and Tracy are dealing with and am sure that the lack of communication from the hospital regarding MIL and FIL's status is making it worse. It is hard to believe that anyone would consider sending FIL home and not to an assisted living facility or nursing home. I've never quite understood how your National Health Service works but have always admired the fact that everyone has access to health care. I hope by the time that you read this post, you have heard the status of both and that someone who has the authority to get FIL into a care facility will have done so. I can't imagine MIL being sent home to care for him. You and Tracy are both in my thoughts and prayers. Tracy is very fortunate that she has such a supportive partner in this exceptionally stressful time. I know people who have had husbands or wives who have the attitude of "your parent, not mine". I assume Tracy is an only child? Which makes your support and sharing of the burden that much more important.

Carole

[Roland]

If there is such a thing as a bright side….being in the hospital means he will actually be seen, and not just for a few minutes. That was what it took for doctors to agree my father needed to be in a nursing home with 24 hour care.

[richardandtracy]

Carole,

I agree it's hard to believe that he could be sent back home and not a care home. But as it has happened twice this year, I think we must force ourselves to believe it could happen a third time.

Just after New Year this year, I went to pick FIL up from hospital and only as I was leaving the ward did a nurse rush up and wave a bag at me. 'Don't forget your spare Catheter Bags' was what she said to me. That was the first thing I even knew about him having a catheter, none of the nurses had told me and it wasn't mentioned in his discharge notes. I had never even seen one until then, and there I was, expected to know how to change it, empty it and change the bag. I wasn't so much 'Out of my depth' as wondering how deep I was going to sink at that point. And it turned out he'd picked up Norovirus Winter Vomiting Bug while in hospital too, which I caught from him & passed on to the rest of the family. Oh joy.

Tracy is an only brat, so we have no other family to share the fun with. And how could anyone be so uncaring not to share all jobs when married? The vow is 'For better or worse, in sickness or in health'. It isn't 'For better or worse, in sickness or in health, except when your parents are ill, or I don't feel like it.'. If you're married, they ARE family. The are legally your family. Hence the term 'Father-in-Law'. The law has been weakened in recent years, but vows made in church have no expiry date. Oh. Yes they do, sorry, I had forgotten. The expiry clause is part of the vow. 'Til death us do part.' A fairly significant expiry clause, I suppose. Being a bloke (lower life expectancy) and being 5 years older than Tracy, I suspect it's not a clause I'll ever be in a position to activate.

Ahh.
I have been writing this long enough for it to be overtaken by events. MIL is being discharged home tomorrow. FIL is going to be discharged home Friday (patient transport already arranged by the hospital). He currently has pneumonia and infected leg ulcers. Sorry, correct that: He still has pneumonia and infected leg ulcers. There is no indication the pneumonia will be enough to prevent him going home and his leg ulcers have been treated with antibiotics for the last month to no effect. His latest course of antibiotics finishes Friday & that's it, he is officially all cured on that day. Nothing will be allowed to interfere even if he still has pneumonia and/or infected ulcers at that point.

Roland..
Oh I wish. Oh I wish.
The carers are of the opinion he's not with us for too long. They've seen similar cases before & know how the dementure progresses. But no professional has been prepared to say that to us.

Regards,

Richard

[Roland]

I’m so sorry to read the end of your last post.

It’s such a different world these days. People are blaming our PM (though health care is provincial) without looking at the fact that these issues are happening in many countries that previously had good health care programs.

~~~

And speaking of doctors, I just called and booked an appointment for myself for tomorrow morning. I got stung by a wasp over a week and a half ago. Instead of being a bit better each day, it’s redder, itchier, and more swollen. Yesterday it looked like there was an apple under the skin. Currently it’s like a huge itchy bruise. Nothing I’ve tried has helped.

[richardandtracy]

Go to a local minor injuries urgently. I got septicemia from an insect bite that didn't get better. I was told I was in a worse state than the previous person the nurse saw with it. That person died.

My armpits swelled up and I got a red line up my leg.

It's serious, don't let it go further. It could be life threatening.

Regards,

Richard.

[wendywombat]

Richard and Tracy I am reading all the past messages you've put up and AGAIN I am appalled how your FIL doesn't warrant permanent care in a proper facility. Hasn't he got a Mental health social worker? Has he ever been assigned to one?
I know that I have told you many times that my late father had dementia and he was referred to the mental health team after he'd had several falls at home and was self neglecting plus refusing to allow carers to go into his home. He was however widowed and living alone.
When the hospital social worker said that dad could go home with carers at a Care plan meeting the Mental health worker jumped in with his assessment and said quite plainly that there was no way that they would recommend that plan.

I really really hope that you can get Proper care for him. I guess one way is to have him Sectioned under the Mental Health Act.

In sickness and in health should not apply in your FIL's case.

to Tracy and you.