My old dad- advice please

[TLJ]

I have just started full time care for my dad. Mum died 2 weeks ago. Dad is 86 and has Alzheimers but what was once referred to as Senile Dementia. I don't know how you tell the difference. He is physically very fit and well for his age. Its the classic scenario; he can tell me everything that happened in the war but not what he had for breakfast. His short term memory is almost nil. I had to keep telling him over again that mum had died every time he asked, which could be several times a day) and each time was the first time he had heard the news. This is getting better gradually.
I don't know if I am doing the right thing by becoming his live-in Carer.
I have just returned form a 2 year stint in Africa as a volunteer aid-worker in the African bush, working with AIDS affected orphans. I came back a year early because I knew mum was getting frail.
I came back in February with no home or job but started to build up my life again. I was lodging in a room in a friends house while I waited to get my own longed for little home. I also started a full time job at the hospital which I was very lucky to get and enjoyed it.
If I decide to do this then I must give up the job and my independence.
Dad lives in sheltered accommodation which only has 1 bedroom. I sleep in the lounge on a fold out bed. The services involved have been very supportive.
We are on the transfer list for a 2 bedroomed place. Dad can't be left alone for a minute.I am praying for a little garden.
I was closer to my mum than my dad. I have brothers who are as supportive as they can be and have promised to take dad every Sunday to give me a day off.
I have just started introducing dad to Age Concern's day centre for a few hours a day to socialise him. He cared for my mum who was very physically disabled but mentallu very alert. She was the thinker, he was the do-er.
I still try to give him little chores which make him feel useful but he has been programmed by my mum after 64 years of marriage.
His mood swings are quite dramatic and he goes from sweet old dad to a miserable, grumpy, swearing, cursing monster in 0 to 60.
Physically I don't have to care for him as he is pretty much self maintaining. He got quite skinny so I am feeding him up. He has a good appetite. We go for walks. We talk about the war. But he has a very short attention span.
We can have a nice walk which he enjoys but within a few minutes has forgotten he's been anywhere.
I love it when I make him smile; I know what he likes and his ways; if he goes into an EMI unit they would not know all these familiar things and I am afraid he would turn into grumpy old misery-guts all the time. I would feel like I was pushing him off a cliff so I can go back to my job and single life which I was so looking forward to.
My brothers would not blame me if i did not go ahead with this, they admit they couldn't cope with him.All I can do is give it my best shot and try to get him used to the day centre and evetually a respite unit. If he deteriorates he would have to go anyway but he could go on for another 15 years or so.
I don't resent doing this, no one is putting a gun to my head, but I really don't think there is a choice.
I would never physically lose my temper with him as I am placid person but I do get cross with him. He is partially deaf(although some of this is habit rather than genuine - he can be very manipulative and feign things)so each time he asks the same question, even simple ones, you have to repeat the answer at least 3 times, so I find myself avoiding conversation which is not good. It makes me feel like a terrible person.
This is very early days I know.
Is there anyone else out there in a similar situation with an elderly parent?
I honestly don't know if I am up to this, yet I know how awful it must be for people who care for spouses, especially if they are younger. I have cared for people before but not this level of mental care with someone I know so well.
My GP and dad's GP are wonderfully supportive but are both tactfully trying to get me to go for the EMI unit option for my own sake but they don't know dad as well as I do; although he lives in the NOW, thoise moments can give him pleasure, even if they are short lived.

Any advice would be very welcome.

 

[Chrissyan]

Welcome to t/p. What a lot you are taking on, I admire you.

Have you thought of asking to go part-time at the hospital & getting carers in at least some of the time? It seems such a shame to give up your new job & if you have a life outside of your Dad & his illness perhaps you will be able to cope better.

 

[TLJ]

Thank you so much.
Yes I have though of going part time but everything is so complicated. I am still getting used to my mum not being around.(Funeral was Monday)....I am applying for benefits and adjusting dad's pension etc...there's so much to take on board. I was afraid that working part time would complicate an already complicated deal.Also, dad is only just beginning to take on board me being here and calls me by my mums name most of the time. Another person in the home would freak him out completely.
If I do this full time then I am hoping that the day care for a few hours a day will help him adjust to new people and new environments where he can learn to trust others and feel safe away from the home. Its been just him and mum for so long.
I am trying to be very positive. Thank you for your response. "Its good to talk"

 

[Chrissyan]

You poor thing, I must admit I hadn't read your post correctly

I didn't realise you were so recently bereaved, it's not a good time at all for you to be making any decisions, but of course you don't have the option of delaying them.

I am so sorry for the recent loss of your Mother.

It is probably far too soon into the job but you could be cheeky & ask for a sabbatical to give you a bit more time to decide if you want to give up work completely. As they say if you don't ask you don't get.

 

[gigi]

Hello TLJ,

Welcome to TP..and am sad you have had to find us..

Hopefully something good will come out of this...

As Chrissyan has said you are so recently bereaved..(sorry to hear about your mum..that's tough)..it's too early to make rational decisions.

I think you should let the personnel department of the hospital where you have the job know about your circumstances..tell them you really want the job..but you need some time..they should be smpathetic..
Let them know you have family matters to sort out..be honest with them.

Meanwhile give your dad a chance to settle..and explore the possibilities of help with his care..and accept the support offered.

You also have a life...bless you for your caring... Keep in touch with us..

Love gigi xx

 

[Margaret W]

Hi TLJ

I might be over-reacting, but you sound to me like the most caring person I have ever encountered on this site or in life. You are thinking of giving up so much of what you hoped to do to care for your old dad. What a lucky man he his to have such a wonderful son. In an idyllic world I would say "stay with dad, do what you are doing", put your own ideas for life on hold and look after your dad, and I would love for you to be able to do that. But you can't, can you? You will lose your chance of a job, lose the chance of your own life, it all has to be a compromise in the end.

You say your brothers are supportive and will have him every Sunday. Don't dismiss the support of siblings, but what about Saturday? What about a couple of evenings during the week? It seems to me you are taking the responsibility all on your own shoulders, cos you were the one who arrived back from Africa with no commitments, so it is assumed you can transfer those commitments to your dad.

You sound like a lovely man, and son, and brother. But you can't do it all for your dad and have a life yourself (which you are entitled to). You need help from your brothers, or get social services geared up, preferably both. Think about it. Your dad would not want you putting your life totally on hold because of him. Or am I too cynical?

People have suggested getting carers in, but you say dad can't be left for a minute of the day, so how are you managing to go to your job?

I think you need to start considering a care home if dad can't be left at all.

Keep us posted

Margaret

 

[Lynne]

Please think carefully

I think you need to start considering a care home if dad can't be left at all.

Easy for me to say, of course, when it's YOUR Dad. But I'm afraid from how you describe your Dad, it will not be long before you are forced to give serious thought to the possibility.

The life-changing fact of the death of Dad's life-long partner & primary carer (until now) may not have come home to him yet, if it ever does. He might accept a care-plan of carers coming into HER house & HER kitchen to look after him, or it might be a huge wake up call for him. Don't ignore the GP's advice out of hand, you (like most of us) have only 1 instance of experience with this situation, the GP has seen many.

You could be abandoning your career, then find it was for only 6 months or so but the opportunity has gone.

Try to think about the WHOLE situation, including your own future, putting your emotions on the back-burner if possible.
When your Dad was able to think clearly, he & your Mum must have been SO proud of you and your work; he would not want you to give up the career you are so obviously suited for without really careful consideration.

 

[andrear]

Hi there and Welcome to TP

I was so saddened to read your post and for the loss of your mum. Your thoughts must be all over the place at the moment, so please do not make any drastic decisions as yet.

I have cared for mum and dad for the last 3 years, although I do not live with them. I didn't exactly decide to care for them but it was obvious that dad wasn't coping with mum when she first became ill with cancer, what I hadn't realised at the time was that dad had started with dementia. It just became impossible for me to work and I have to say thats when my nightmare began.

I love my parents to bits, but its affected my health, I've lost contact with numerous friends, and my life is no longer my own. So please, before you make any decisions think, and think again. You say family are willing to help out, but for how long?
How long are you prepared to put your life on hold?

Please don't make any rash decisions.
Love Andrea

 

[TLJ]

Many thanks to all who have responded (although Margaret, I have to tell you I am a female
All your words are very helpfull.
I have already cleared with the hospital that I will notify them but as I am uncontracted I have had to apply for carers allowance because I don't get paid for any time off. They cannot keep my job open indeffinatley.
I have decided, (I think) to take this course:
Give up my job; go on Carer's allowance, do the best I can with dad for now (although I also think it is only a matter of time before he needs to go into full time care) but then I will be able to say I gave it my best shot.
The purely selfish side of this (and I have to be sure I am not sub-consciously doing this for this reason)is that I have the chance of getting a decent home from the council, the first proper home I will have had in many years. They have assured me that if dad goes then I will be able to stay on, so it is not all altruistic.
I am hoping that, with a 2 bedroomed home I will cope better with dad as I will have some privacy. At present I have none and he follows me from room to room. I have to wait for him to be asleep in bed before I can have a shower or he rattles the door handle.

This is a terrible disease for any age. It sounds bad but I wish my dad had gone before my mum as, although 84 and severely physically disabled, my mum would have been easy to care for and a joy to be with as she had all her faculties. She would have coped well with the loss of dad.

I still see dad as a bit of a hero; he was a Desert Rat in the war and served with Monty at El Alemein....his war stories are wonderful. Its a shame for a hero to end up like this and with his level of fitness he could go on for many years yet.

His mother (my grandma) went the same way although she died at 78, is this a hereditory condition?

3rd day for him at Age Concern...when I pick him up he nearly cires say "get me out of here...thank god you've come for me". But when I ask him if everyone os nice he says yes and they tell me he is settling a bit more. I shall persevere with this arrangement and he should start to get used to other people looking out for him. This, I hope will break him in gently towards respite and eventually a full time care home.

TLJ

 

[Lynne]

Good Luck TLJ

Whatever decision YOU make (after careful consideration) will be the right one for you.

Best wishes

 

[jane@hotmail]

TLJ,

I think you should care for your dad. You quite obviously love him deeply, you've thought it through and you're making plans. I admire you for that and it's quite obvious that you're not one to back away from a challenge........ I think you may find this your toughest challenge yet though!

To care for someone you love full time is all consuming and mentally and physically exhausting. Don't underestimate the support you'll need to stay sane. You plan to look after your dad until he needs to go into a care home. Easy to say now, but when is the right time? Don't take this on lightly.

You've obviously got your dads strenghth of character, you both sound like a force to be reckoned with! I am so sad for you both over the recent death of your mum (and wife) and I think whatever decision you come too, it will work out fine but either way, remember to keep in touch with us at talking point. I'm sure you'll find the support and advice its members can offer invaluable.

Good luck to you,

Jane x

 

[TLJ]

A Groundhog Day in the life of me and my dad....baring in mind that to every question asked my answer has to be repeated at least 3 times and is then promptly forgotten and asked again.
Also, I know there are people out there coping with tons worse and for years and years. I'm just letting the words out here cos it helps.

Wake him up.
Dad eventually gets to the breakfast table. Drinks tea saying "please god help me" cos he still feels tired.(even when he was young and mentally fit he was always a bit of a drama queen and prone to gross exageration).
Eats cornflakes; "I can't eat all this, its far to much" finishes all the cornflakes.

Take him to Age Concern day centre.
(Getting used to it a little but still complains)
Pick him up from day centre, he practically falls to his knees; "thank god you've come, please take me home, oh god, oh god, help me, get me out of here, please, get me out of here."
He sounds as though he has spent the last few hours being beaten with sticks.
I ask the staff how he's been. He has apparently been fine, ate a good lunch, helped with the washing up, joined in the quiz for a little while and won a tin of sardines.

Get home, cup of tea or go for a drive round the countryside which he enjoys.
Sits in armchair. Spends the next hour taking off his glasses and putting on his reading glasses, then in reverse, over and over and over trying to figure out which is which even though I have put a tag on one pair;' he doesn't stop, no amount of explanation helps him, he gets more and more anxious, "oh god help me". I wonder if he would cope with bi-focals.

"Where's Connie?"(my mum) "She passed away dad, 2 weeks ago". "My Connie dead? No, not possible" ... enter Mr Nasty old Git > (said in Exorcist type voice, face changes, voice changes)"Whats going on here? Somethings not right...something's going on...I'll find out what's going on..."etc etc . gets out of chair, slams the newspaper down, paces up and down the flat swearing obsceneties and growling.

I make dinner, always things he loves; >"Too much here...I can't eat all this...far too much."
Eats every last pea.
Sits and watches Spring watch. Laughs at the baby birds, enjoys it. Smiles.

Dad > "Who's missing?"
No one dad.
"Who else should be here?"
Mum but she passed away.
"What, my Connie, died? No. Not possible"...enter scary dad again;" what's going on, something's going on"

If it goes on too long and late and he is not placated by my efforts or my ignoring it I have to order him to go to bed like a naughty child.
He goes off and gets into his PJ's swearing and cussing.
Comes back into the room to say goodnight, all smiling and sweet."Na night then". He goes off.....10 minutes and he's back...."Are you coming to bed?"
"No dad, I sleep in the living room remember?"
"What...you sleep in here?"
Yes dad
"OK, suit your f$!&*%$ self" ...goes off to bed.
10 minutes later he's back..."Don't be long"
"Dad! Just go to bed. I am staying here" (I'm feeling tired now)
>"What, you're not coming to bed?"
"Dad, I am your daughter, I don't sleep with you!"
Cursing and muttering he goes to bed.
I sit in his comfy reclining chair and cry.

 

[Grannie G]

Hello TLJ

What a graphic picture you have painted and how well you have told the story of how dementia would try the patience of a saint.

I don`t know who deserves the most empathy and understanding, your father or you.

Take care xx

 

[Skye]

Dear TLJ

It's hard work, isn't it? And sitting crying goes with the territory, I'm afraid.

Don't let it get you too depressed, ask for more help. You're entitled to it.
I think we've all persevered for too long before asking for help, and it doesn't pay. Things won't get easier, and you'll need your strength.

As for the glasses, I wouldn't recommend bi-focals, the changs in focus could make your dad liable to falls. Varifocals might be better, but even so they could be dangerous. I know when I started wearing them I had several dizzy spells.

Could your dad manage without one of the pairs, or does he really need them for reading and distance?

 

[Lynne]

My sympathies (& empathy) on your groundhog day

It sounded remarkably like a script which could have been written from observation of Mum and me! Apart from the extra factor of your bereavement that is, for which I am sorry.

I don't know if this suggestion might be any help, but when my Mum last had new specs, I 'encouraged' her to choose some square shaped frames for her TV ones, so they are shaped like the TV. Her reading glasses are quite different in appearance. She still doesn't get it right 1st time, but she no longer shuffles them round & round & round ..... If your Dad is of pensionable age, it shouldn't cost very much. (You could always fib to the optician that he has lost or broken the TV pair ..)

 

[Margaret W]

Dear TLJ

Apologies for assuming you were male. I am ashamed of myself. As the first female Accountant in my multi-national organisation in 1977 I ought not to have made that assumption.

You have thought this through. You know what to expect. You want to do it. So do it. Look after your dad for as long as you can. Yeah, take advantage of the council system of allowing you to stay in the accommodation if that is how it works, after all you are saving the government thousands by looking after dad, and I am spending thousands on my mother's care cos she had her own home, so I'd like to think someone who sounds as genuine as you is at least getting some benefit from the thousands I spend.

Just remember that you have a life, and are entitled to it, so when things get really impossible with dad, suss out alternatives.

And Good Luck to you. There are lots of people on here looking after their rellies one to one, I am sure they will all give you 100% support.

Much love

Margaret

 

[TLJ]

Thanks all.
I rather hoped in a sadistic sort of way, that others would see their story in mine. Sorry that any one else has to go through this but realistically I know so many do.

I don't think theirs an answer to the glasses fiasco. He knows the difference between the 2 pairs but its doesn't stop his brain being unable to differentiate. In the end I "confiscated" the ones he wasn't using. Then he couldn't decide if he wanted to read or watch TV. (a different pair for each).

Its not all doom and gloom here, I am able to see the funny side sometimes.
Like in the middle of mum's funeral service when the minister was giving the address and he says in a very loud voice..."Can't hear a bloody word she's saying!".(muffled giggles all round)

Like one night in a thunder storm when the lightening flashed and there in the doorway was a lookalike of Rameses' mummy in his pyjamas and I nearly died of fright.
(I laughed afterwards).
Like today when my brother gave him a Father's Day gift and put it in a carrier bag; as we started to leave dad asked what was in the bag he was holding, we showed him his present again and his reaction was of being given it for the first time ever. We figured we can give it to him every day and he will think he's getting a new prezzy every day!

I have been recommended a book by my wonderful GP called, 'The Selfish Pig's Guide to Caring'. The person you care for is called PIGLET (Person I Give Love & Enduring Therapy)

I s'pose it goes with the territory to feel guilty for wanting one's own space and time. Its very early days for me and I have to learn to balance things out.

 

[TLJ]

Thanks Margaret and no worries!

Got and reading the book 'The Selfish Pig's Guide to Caring'. Very funny and helpful, fully on the side of the Carer and written by a Carer. Honest, down to earth, pulls no punches and funny.
I have just found out that, although a bit deaf, one of the reasons I have to repeat everything at least 4 times is not that dad is deaf but that the Alz prevents him making sense of what he hears.

He has just started taking medication (Memantine). Today he got very sleepy and shaky.
I am seeing his Shrink with him tomorrow although last time I saw himi thought he was condescening and pompous! Like he was writing my dad off cos he's old. Just stick him into care. I am sure that by understanding the individual psychology of each patient it could help in the management of their illness. That's one of the reasons I am staying with dad. I kind of know him so well including all his little idiosyncracies so I can stage manage things a little. I can see what's going on in his mind to make him react on a certain way. I find it hard to beleive that staff in care home would bother to even notice.
However, his GP, who is lovely, is arranging a Care Team to support us. They will sort out some care homes which I can visit to see what they're like.
I have to say, the staff at Age Concern are lovely and very good with him.

What I find hard to cope with is the silence which i find myself retreating into. Because everything has to be said so many times, even the simple things, I end up not saying anything at all. Thats not good I know and I am trying hard.

And the fact that everything i do, all the effort to make him happy and treat him, things that make him happy for that moment, are then gone.Erased. Like they are deleted. There is no lasting therapy from any of it for him.It is despiriting isn't it?
You spend the day driving him around the countryside which he loves, going to a museum etc, then 5 mins after getting home he is pacing about saying he is fed up being stuck in all day and swearing about it. Its all gone.

 

[jenniferpa]

I know what you mean about feeling let down when you've provided entertainment, it's been enjoyed and the next thing you hear is "why can't we go out?" I did find this difficult with Mummy. All I can say is that I think the only way to look at it is that while the pleasure may be fleeting there was pleasure and that we do these things for ourselves as well. It's the old "nobody wishes at their death bed that they'd spent more time at the office" - these things at least allow us to look back finally and say "I tried".

 

[TLJ]

Thanks Jennifer.
Yes, I read a book called The Power of Now and I have to accept that my dad lives very much in the NOW. Not then or when but now.
If I know he was happy for that moment then the happiness must have gone into his subconscious surely.
I s'pose it makes you question, am I doing this for dad or to make myself feel better?
Nothing wrong with either reason really. Maybe a bit of both.I think it's important to know one has given it the best shot so I won't one day say " I should've done this or that".

The only thing I really can't deal with in any way ( and I can put up with poo and stuff) is false teeth. Makes me heave!
Old men can be so yeuchy. Got no chance of a love life with dad farting and belching and taking his (yeuch) teeth out to inspect them.

One thing that I know does make him happy though...Ambrosia rice with strawberry jam. Yum. Me too!