No one knows what goes on behind closed doors

[Humptydingo]

I took OH with me to a reunion of 'girls who worked for me over 30yrs ago, all of whom knew him - some much to chat and laugh about, we had a really good long lunch. He always seems to come across as more 'normal' and able when we go out and also when he sees his siblings so I get him out to a restaurant with his sisters every week.

However I find it very frustrating that no one really understands what happens behind closed doors when we get back home and all the things I need to do for him (including all those things which you don't discuss in public) and his actual mental state - he is in a wheelchair and has no balance or coodination meaning that he's only just about able to feed himself, can't use the phone or even a tv zapper and his mind drifts off. Everyone is so full of ideas as to how to occupy him and I am sure they don't believe me when I say he's not able to concentrate etc. and they think I'm restricting him or haven't even thought of the things they are suggesting.

He has carers come morning and night to get him up and back to bed and the local services have been so forthcoming with home equipment (hoists etc.)
and visits but they are the only ones who really know .............

 

[Grannie G]

We know Humpty. It`s the beauty of this forum.

Whatever you have experienced and however it sounds, there`ll be someone who knows and understands.

I don`t think any of us understood before we had the experiences.

Keep posting. You will get understanding here I`m sure.

 

[Georgina63]

That's what's so great about TP isn't it? I have found so much help and support sharing the experiences of having 2 parents with AD. With the exception of a few professionals that I have had the pleasure to meet, most other people (including family), well meaning as they may be, often just don't get it! You are not alone in this. We all inhabit a world that most folk are sheltered from and for us it has become the new normal! Best wishes. Gx

 

[MAMMYGRANNY]

Hi Humptydingo,
I know how you feel - it's so frustrating!!
Although he hasn't reached the stage your husband is at yet in that he can walk and feed himself DH is much more incapable than he appears to friends.
He can switch like magic when others are around - then afterwards it might take days for him to recover from the effort.
I've been told I have him 'spoilt' by doing things for him but the truth is if I didn't he would either stay in bed or sit in his armchair all day if left to his own devices. He is not able to initiate any activity on his own and does nothing in the line of chores apart from loading the dishwasher after dinner which is one of his obsessions.
I have seen him actually collapse from hunger rather than get food from the fridge (when I was delayed in coming home from the shops) yet he is physically able to walk and to feed himself.
He can fool most people by chatting away
( always switching the conversation to 50 years ago!). People don't spot this unless they are in his company for an extended time!
I too have had many 'helpful' suggestions - at this stage I just smile and say something non committal but it is a bit annoying!

 

[Beetroot]

My cousin who lives abroad and has seen mum all washed and dressed with hair done nicely, sitting in a chair, came for the day straight off the plane. She was witness to the Getting Up process when we are very muddled and the Going Out process when we need guidance every step of the way and reminding where we're going. Whilst out, she also witnessed the Going to the Loo When Out process which takes approximately for ever. She is a lovely and sensible woman who is very fond of Mum, (which is why she took the trouble to drop off in the UK for the day en route to elsewhere) but I got the impression she was somewhat brought up short by what goes on behind the scenes. I am hoping she'll let the rest of the family, who see hostess mode only, know.

 

[HillyBilly]

And do please also remember that

(all those things which you don't discuss in public)

can be and are absolutely discussed here, no problem! That's the beauty of TP.

 

[curetta]

you know who your friends are when you are caring after someone with Alzheimers

My mum can be fun and entertaining in company, we enjoy, when we get the chance, company either just for coffee or sharing meals, eating out, music and dancing, She likes to be the centre of attention and as long as people are interested and have not heard her favourite stories ( not always accurate or true recollections) too many times - I can relax.

But when we get home she either has no recollection or "remembers" what she considers as slights or poor service and generally bad "things". I am quite easygoing but observant - and my recollections are often quite different. Friends understand when she can't remember them or their names, or she was at their home for a meal the previous day. and just act "normally".

It spoils the enjoyment when my mother tells me she does not like them and they treat her badly by ignoring her when they do include her in their company. She can also be quite rude to them.

Nearly everyone has their own problems and social events should be a time to relax and forget worries.

Upshot is - you know who your friends are when you are looking after someone with Alzheimers.

Hi Humptydingo,
I know how you feel - it's so frustrating!!
Although he hasn't reached the stage your husband is at yet in that he can walk and feed himself DH is much more incapable than he appears to friends.
He can switch like magic when others are around - then afterwards it might take days for him to recover from the effort.
I've been told I have him 'spoilt' by doing things for him but the truth is if I didn't he would either stay in bed or sit in his armchair all day if left to his own devices. He is not able to initiate any activity on his own and does nothing in the line of chores apart from loading the dishwasher after dinner which is one of his obsessions.
I have seen him actually collapse from hunger rather than get food from the fridge (when I was delayed in coming home from the shops) yet he is physically able to walk and to feed himself.
He can fool most people by chatting away
( always switching the conversation to 50 years ago!). People don't spot this unless they are in his company for an extended time!
I too have had many 'helpful' suggestions - at this stage I just smile and say something non committal but it is a bit annoying!

 

[canary]

I think we have all seen the "host/hostess mode" where the person with dementia (PWD) can suddenly, as if by magic, appear much better - perhaps even pretty normal - in front of friends, other relatives and medical staff!! It takes them a lot of effort and they cant maintain it for long, but its usually enough to fool people who dont see them much. Yes, they have no idea what happens behind the scenes once they have gone (when the PWD is tired after maintaining the host/hostess mode and is usually confused and grumpy), or how much effort is needed to get them to appear as they do.

 

[irismary]

Oh yes humptydingo I get the same. My OH looks really well, is happy, chatty etc but people have no idea that I do pretty much everything for him from shaving to putting socks on etc. A friend said recently she thought he just forgot things - yes he has pretty much forgotten everything including how to clean teeth, cleaning himself etc. He told the receptionist at the leisure centre he wanted to swim regularly - he can't swim and hates water but I got some mean looks for not letting him! I think that is what sets this condition apart from others - its not necessarily worse (there are lots of terrible diseases and illnesses) its misunderstood. At least here on TP were understand the situation each of us is in to some extent. When I asked him the next day if he really wanted to go swimming he looked at me as if I was mad and said he'd rather do anything other than that.

 

[100 miles]

Which makes me think of the killer looks I got when trying to persuade my mum to buy replacement shoes (because hers had holes in their soles). She was telling me she didn't want to buy any today and would do it later at the local shop - which had closed 25 years ago. Or would go out with her friend - who had been housebound for a couple of years.

So yes. I had to force her to choose new shoes. Everyone thought I was daughter from hell, including mum. But it was a good day because she finally got new shoes. And she had forgotten the trauma by the time we got home.

But I had to magic old shoes away or the new ones would be kept for best and never worn.

Now repeat for undies. And a few weeks later for slippers etc etc .

 

[nae sporran]

OH's son visited a few weeks ago and they chatted happily, but she had no idea who he was half an hour after he left. It was heartbreaking, the first time she has been so bad. Son and daughter are slowly beginning to realise this is how their mum is going, but neither seems to really understand.

Best wishes to everybody on this road.

 

[maryw]

On this road too. Everyone comments on hubby's tanned face and they miss everything else..... You'll find empathy here...

 

[chick1962]

And from me too, as no one knows I have to shave and shower my hubs . He rarely sleeps through the night and I am up at least 4 times . Get the same comments on how well he looks and how good he is !


Sent from my iPhone using Talking Point

 

[canary]

He told the receptionist at the leisure centre he wanted to swim regularly - he can't swim and hates water but I got some mean looks for not letting him!......(snip).........When I asked him the next day if he really wanted to go swimming he looked at me as if I was mad and said he'd rather do anything other than that.

OH has dreadful apathy and doesnt do very much now. When the doctor asked him what he would like to do, he said he wanted to go rock climbing - this is despite him having peripheral neuropathy, balance issues requiring him to use a stick and hand tremour

 

[Casbow]

Talking to a close friend not long ago I was saying something about my husbands behaviour and that i was worried that people would think bad of him. Her answer was, Oh don 't worry, everyone understands. To that I replied No-one understands unless they live with dementia 24/7. I stand by this. How can they know. It is ,in my opinion, just about one of the worse illnesses we have to live with. It just goes on and on. In mu husbands case it is now 9 years. We all just get on with it. In most cases ,like mine ,because we love our partner and signed up for life. So we just keep going.xxxxxxxxx

 

[Kjn]

Nope nobody knows, Unless you are in it 24/7.
lots of empathy here X

 

[chick1962]

OH has dreadful apathy and doesnt do very much now. When the doctor asked him what he would like to do, he said he wanted to go rock climbing - this is despite him having peripheral neuropathy, balance issues requiring him to use a stick and hand tremour

John has balance problems and tremors so that sometimes he needs feeding as the food falls off and hand to mouth is compromised xx


Sent from my iPhone using Talking Point

 

[Loopiloo]

So much on this thread is extremely familiar... Before I found TP although I had read everything I could about dementia I wish I had found it years earlier. I had no contact with anyone familiar with dementia and then I learned such a lot from so many people here.

Learned how many were dealing with similar dementia issues as I was - I wasn't the only one as it often felt to be. Despite telling myself it is the illness, not the man I love who was good natured, laid back, very caring and loving... it often felt that it was him. He hated me, or he was being deliberately difficult, and much more.

Especially when he could be his own lovely self in the presence of others, and with little sign of dementia, and so on and so forth. I know in the earlier years even friends of many years thought I was exaggerating so I stopped mentioning anything. Or thought I was being a "doormat" for "putting up with unacceptable behaviour" as one said when the verbal aggression started, and developed. As for personal care when that began to become necessary, they would have been horrified.

So true that no one knows what goes on behind closed doors. But what else does anyone do when their much loved partner develops this horrible destructive disease... 'For better or worse...", and caring, loving...

I shall be forever grateful for finding TP, and how much worse we would be without it and the wonderful people here, who truly understand.

Loo x