I care for mum and dad both with dementia

[Jaff]

Upset.

For the past week I have rang every day to care line. To speak to a s. W. That said she would ring me... as soon as a care package. ... for mum was ready to go home...... as her days are up now..... and a lovely surprise when mum stood up straight . And started to walk with her Zimmer..... . So when she walked to the hairdresser. ..... there is an room for her. I was happy thinking.... things are looking up.....
I could not have been more wrong.... so while mum was getting her hair done.. I go into the garden...... ring care line again..... gave the name of the social worker..... and waited for her to ring... again...... oh she rang ok... but not the new a wanted to hear......... she had left her job..... any luck with c. P. No...
. As mum needs two carers.... four times a day....... and no one has picked up........ so there I sat. Crying again.... what I going to do..... a rang cl again.. say ing please..... who will look after mum now...
I need to get her out..... and I agree with mum it's house of horrors......... so with a lot more calls..... I get a new name........ and that she would put out to the provide es...... and would ring me soon as..... Will they...... I explain... that a mum Hates the home... and b it will be near for me.... as dad only five bus stops away. If mum comes home...... I know people are saying to me. She safe.... yes. But not happy..... I was drained. So came home...
Starting with a cold now... and I feel rough...... going to see dad tomorrow.. then mum....
Then on Friday. Rest...... nothing seems . To be going right again..... when I came home there are two letters from dad's place........ both with wrong surname.....
And one puts me in a difference city.... but the post code was right....... unbelievable............. I wish this black cloud that keeps following me.... m would go away.....

 

[grove]

So. Sorry.

Jaff. You are having S W problems and the good helpful. S W has left. How annoying for you ! > sorry no real advice as never dealt with S W 's ( Dad does not have one). Am glad tho your Mum is able too walk with a frame. .

Just wanted too push the Thread up for you

Sorry you are feeling poorly. Please look after your self and if need be take some mild pain killers or some thing similar.

Hope you feel better soon

Thinking of you all

Love and. Hugs.


Grove. X. X x

 

[grove]

HELLO Jaff

How are you ? hope you had some rest today & you are feeling a bit better & your Mum's discharge Care Plan form the C Home is soon sorted out Hope you have a better visit next time you go & see her



So sorry your Dad is so poorly lots of kind thoughts , love & hugs in the days too come


Take care


Love Grove x

 

[Jaff]

Thanks grove.

No rest today.... went to see dad...... starting to get confused.... .. his little face lite up when I showed him a banana..... it took him an hour. But he eat it....... then on to mum..... no change. No phone call nothing. So I am on the case tomorrow......... tomorrow is rest day.. and birthday...have not planed anything
I will just see what happens......many thanks grove for your hugs....... which I need...... it's going to be strange.... having no brother....... dad very poorly.... mum on a home she hates and so do I...... .... let's see what the day brings.... thanks grove again for keeping in touch. It does seen so lonely. ........
..

 

[grove]

Happy. Birthday

Jaff. Glad your. Dad enjoyed his banana sorry about your Mum & the S W is not really helping Hope you have some better news soon

Best wishes for a Happy. Birthday

Love. Grove x

 

[canary]

Happy birthday jaff.
I do hope you manage to get some rest today. Do something nice just for yourself to celebrate your birthday, even if no-one else realises thats why you are doing it

 

[Jaff]

Unbelievable

Is this my dad..... this pass week he has been on top form... even thou he can not see well..... and all the other going on him..... loves his bananas.... his sense of humor. Brill. He is sometimes better than mum. Even thou he is confused.... most of the time. He is on the ball... he wanted my coke..... he has started singing..Is watching tv more.... loves to make me laugh.... if he see I am laughing he will do it even more........... what's going on.? The home hurray has listened to me.... and asked the salt team to come in......... is this normal when they are supposed to be near the end of life... what is going on.... I fined it hard
. To understand....... don't get me wrong.... still not eating.... . Will drink coke and tango. Water.. all with the thicken in............ it was last week the nurse says to me his kidneys are going the blood result was low...... dad really ill. I don't understand..............

Mum how ever. Is the opposite........ started phone call in the evening around eight.... shouting down the phone there are strange men in my house... do something....... when I tried to explain where she was.. that was it she started shouting at me.... would not listen....... so I rang the home up... to go and see her... as she was in her bedroom.... ( she goes up early now. As she can not stand the people ) so she tells me........ the heat like the rest of us does not like it at all. Carer had to change nightie. As the sweat was running off her...... next day took a fan in...... she blanked me gave me horrible looks... and started shouting at me............ what have I done? She would not answer me..... the matron just arrived to check her over.... as I told the night staff was worried over her...... and then to arrive and get shouted at..... found out later she had a bad night and cried all night.....
. And she said she was missing my brother...... so I am thinking. Because I did not see her for two days... maybe this has what caused it..... I don't know... went in to day she was fine.
. Still hates the places... and I do.....
Phoned care line everyday... found out mum had no sw.... but my call would go to the duty sw........ a phone rang this morning..... and they had given mums case back to the original sw.... unbelievable.........

.

 

[canary]

Hello Jaff. You are really going through it arnt you?
Sometimes people with dementia look like they are at the end and then bounce back again. Ive been told twice this year that mum was unlikely to survive, but she is still with us and Ive heard from other members who have had the same thing happen to them. I guess the same thing has happened to your dad. Its a real rollercoaster. The CH will have called in the SALT team now that he is eating and drinking again. Mums had a SALT team assessment too. They recommend thickened drinks if the swallow is not very good as the thickening makes things easier to swallow.

Your mum sounds like she is sun-downing. I am concerned about her phoning you up when she is in this confused state - it doesnt sound like it is doing either of you any good. Perhaps it would be a good idea to take her phone away from her - maybe its broken and needs fixing I expect that this is the reason why she is upset with you - she is afraid (because she is sun-downing) and phoning you, but you dont (cos you cant) do anything - she forgets what happened during the night, but the bad feeling stays.
Im sorry to say that these days people dont have a SW permanently assigned - as you have discovered. Its good that she has her original SW back (unless shes useless!) as she will know about your mum.

I do hope things start to settle soon
xx

 

[Dave66]

Hi Jaff

I'm sorry that I cannot offer any positive advice to you.

I just want to say again what an amazing job you are doing and it is a great tribute to your parents for the way they raised you.

Try to remain strong, I know the dark days can seem to go on and on, but there is always some light, some where.

All the very best to you and your parents.

 

[grove]

Hello. Jaff

Sorry no real advice but just wanted too say you are doing a FAB Job in difficult circumstances and you are amazing. ! ! (I know I could not do it ! , helping too look after my Father is not easy ! ~ he lives at Home with Mum and I help out when Mum has a GP appointment etc)

Thinking of you all


Lots of Support and Hugs.


Love. Grove. Xx

 

[Jaff]

What a day

Received phone call late afternoon yesterday........ that mum was coming home...... help....... lots of phone calls... sort shopping out.... which I was made up with.... Did Tesco online...... got it delivered mums...... hurry... that saved time.... what is it with me..... I feel that black cloud around me a again....... why oh why can not anything go straight...... first... I fine out the fuse had gone on th board........ no tv. No lights no care line.. where you press red button... no fan...etc......... so looking for fuse wire.... putting shopping away.

When they came to assess the house........ man and woman...... they will be with mum for six weeks until a care package . .
Comes up........ poor man feels sorry for me......... does fuse... good. Then it went bang...... omg. What am I going to do......
Lol he says don't worry I will try again. Thank goodness it worked...... then mum came home...... not with care res.... with the cleansers.......... then found meds where wrong........ then they sent wrong clothes. That don't belong to.mum........ then I fined her pads. And other things miss ing.... so I rang up....what did they do... sent it in a taxi which I had to pay six pounds thirty pence.............. must say. The two caterers that came where wonderful with mum ( just hope it stays like that )....... ... the time I put everything away..... it was time to go.... mum started doing her betty Davies act... because I said I was leaving..... before she was ok.......... I was up set
I did not even have time to go and see dad...... I felt awful......
Because I was so tried got taxi home... I live 20 miles from mum and dad.......... one thing thou mum near dad now..
So let's see how long she stays in her own home...... the sw. Wanted to give her indenpenteds.... many thanks for all your support...... I really don't think I could do this with all your help..... thank you........
..

 

[Jaff]

Dad wants a chippy dinner

For the last three days dad asked for me and the nurses to go the chippy. For a fish.. and scallops....... every day he is saying he's hungry...... takes banana off me straight away ..... when feeding dad before it would take an hour..... he finished in no time..... with his yogurts........ well not talking to me know as the home pureed fish fingers for him..... he threw it at me saying that's not fish..... now will not eat anything..... have asked again.... they don't know when the salt team will be in.... I am hoping to put him on a soft diet....... he is so stubborn...... keeps saying it baby food take it away..... sitting here quietly crying....... ... on Saturday the home did a garden party
. For the queen. With a singer.... I asked could we try dad in chair... they said yes....... he stayed out for 20 minutes.... before telling me his back hurting also..... he was curling up to one side of the chair....... he said he enjoyed the singing...... but his back was hurting....... as soon as he was put to bed he was a sleep...... I don't know what's going on but all this week he has been on top form.......... until today when I said this is your fish...... now he's gone to sleep..... I asked for soup... no will not have that...... don't know what to do for best.......

 

[Chuggalug]

Oh Jaff, its heart-breaking when they reach that stage

Im glad your mum enjoyed her birthday - its a memory to treasure in the bleak stuff.
Thank you (and jknight) for the birthday wishes. Im sorry I sounded so fed up about it - I know it goes with the territory, but we are still human.

I cant believe that they are keeping strict visiting times. I know a lot of hospitals do this (though they usually lift it for people with dementia), but Im really surprised that a CH is following the same rules and not allowing exceptions for PWD!

Hang on in there.

My CH are the same with those rules. I'm stunned, reading through this. How do you do it, Jaff?

Back to reading...

 

[Jaff]

Bad day

Had a very bad day and I am exhausted... ... could not sit down and talk to mum.... as there where so many things to do...... what would you do if you walked into the bathroom... to find mums raised toilet seat on the floor??! Who did this!!! So on the phone I go...... the day before the o. T. Came... did she do this! Or the carers! Which by the way no one was owning up....... mad.. I was........ took time to find phone no for ot. But got there in the end to find it was her day of so.... left message to ring....... these people come out to see mum. And I don't get to know. As mums short term memory gone......... rang sw. Please if any one comes to see mum please ring me...... also I can open up a shop as mum got four comodes............ while I am there carers come in to give mum lunch...... etc.... I go checking to see what to get for mums food shop... to fined no bread...... why could they not tell me when leaving!!!!!! Had to go in pouring rain. To the shop on the corner. To get bread and milk....... started now to do on line shop for Tesco.. to be delivered on Friday........oh I had a go on putting seat back..on the toilet... I think I have done it right...... but why take it of..!.. then I fly down to see dad... to fined photo frame broken......... and when I go in dad's fridge. It rocked.... and a whole hug of juice flew out.... river on the floor...... I give up...... then while talking to dad. It started to thunder and lighting...... so I waited until it was over before I came away......... and then ran into it again on the way home...... I think it's rest day tomorrow....... sorry for going on I am just so mad....

 

[canary]

Oh Jaff, Im so sorry. Its the build up of little things that get you isnt it?
I do hope today is better.
I take it your mum is home now - yes? Any sign of the SALT team for your dad?

 

[Jaff]

Hi canary

No. To the salt team. The nurses say. It can take up to three months.. ... so I am still smuggling my banana in for dad... and yes mums home... glad in one way... she near to dad now... I don't have to go a cross town... which saves on time. And money..... just chilling out today. No phone call from o. T. Yet.... thanks for asking.

 

[canary]

Im glad you have had a breathing space jaff.
The problem with having to deal with 2 people with dementia is that you just about get one problem sorted out for one of them when another problem with the other one raises its head! You truly have it doubly difficult because things are changing so rapidly with both of them
xx

 

[Jaff]

Having a good cry tonight.... I really do miss my brother...... I hope he agrees with everything I have done for mum and dad... as they both miss him to... poor dad does not know he is dead... and it's very hard for me. I have Been advised not to tell him.
Still waiting on the inquest..

 

[canary]

Oh my, that inquest is taking its time, isnt it? Im sure your brother would approve everything that you have done - you have worked so hard for both your parents.
((((hugs))))

 

[Jaff]

Thank you for that hug. I need it..
I don't know why. But I am still crying this morning..... ..