General Chat

A New Saga

I am starting this thread before Mother moves in with me because of all what has happened now.
2 weeks ago when we saw Mum she was so alert and asking questions that you wouldn´t have believed that she had dementia. She was so spot on I was actually looking forward for once of having Mum with me.
When I went to see her on the next visit, she was so very different. She was slurring words, couldn´t eat and was generally giving me the impression of somebody who had, had a stroke.
I e-mailed the home with my concerns and they phoned me the next day. They said that they had just changed Mum´s medication because she was very "active" before. I left it at that on the phone.
Today I went up and there was no change ..I couldn´t understand what she was saying because of slurring words and she can hardly drink because she spills so much. So I talked to the Nurse, to ask what "active" meant. They changed the medication because Mum has turned nasty, she throws things at the carers and she also scratches them, (Mum has fantastic strong nails).
Now I can understand that they can´t cope with Mum like that, nor could I but I hate to think that she is losing something because they are sedating her.. She is still as demanding but doesn´t have the where withall to shout or fight.
I was happy to see Mum back with some fight in her and to be able to understand, but I also know that when I have her 24/7 I may wish for different.

One of the carers, who Mum actually likes, said to me today that if I allow Mum to be active I will have no life, she understands that Mum was always going to live with me but she has given me her phone number for when I need help, because she believes I will.
OH hopes that once she has what she wants ie. living with me she will learn rules that I lay down and settle down. I would rather her "active" then sedated as she is now. If she throws anything at me I will throw back until we understand. but as she is I don´t know how to cope because I can´t understand what she wants.

I guess this new phase in my life is going to be mmm interesting.
I will say that I never in my young life ever, never thought I would look after an aged parent in fact we talked about it and even though Mother said it was my duty to look after her I always said no, Guess she was right I was wrong. In someways But it isn´t duty making me do this, It is because my father instilled in me a sense of family.

So I about to embark in a whole new experience (how else do I look at it ? )

I don´t move mother in with me until the 30th June.

BUT I WILL BE BACK

Uzziln You have a very hard journey ahead of you and I admire you taking on such a task, but for goodness sake take any help that is offered, if any, you must look after yourself . Please don't feel too guilty if you have to give her medication though I'm sure it will be hard for you. I hope everything turns out the way you want it to. Take care.

Nolls from Harrogate thank you, trust me I will take any help offered. Not normal for me, But I realise that I have to accept help because this is new to me.

Going to be strange but hey ho so is life

I know very little about dementia but reading your post I seems to me that your mum needs a medication that is not as strong as she is taking now. Something to calm her down but where she can still understand what is going on and can eat, drink etc.

Wendy

Uzzi, I hope you can get your mother to settle in well and maybe behave a little better than at the home, but if necessary for your own and her safety and wellbeing she will need some medication just not as much as they are giving her at the home. I always think it is sad to see people doped up on stuff to keep them quiet but I suppose if all the patients were disruptive it would be hard to keep everyone safe.

I am glad the carer your Mum likes is being helpful to you too - you will need a break from time to time for your own sanity, so keep her on side.

Take care

Lizxxx

Uzzi - hope your mom settles down with you quickly and as others have said look after yourself and OH and take what help you can get - but dont really know if there is much help here in Spain - they always think it is family duty.

I will never ever forget the last time I saw my mom way back in September when she let go at me - it was so hurtful but her emotions were all over the place and so were mine !! She even threatened to hit me - she said at 65 I was not too old to be hit by her !!

You can always pm me I will be here for you.

Tale care
Love Mary xx

Girls Thank You Liz and Tenerife I know that I have to settle Mum and it is not going to be easy. but see below.

Mary
Your offer of a pm made me cry, well eye leak. Thank you for that. I am so very sorry to hear that your last visit with your Mum was not "happy" seeing as you and she got on so great. Eck if that had been my mother I wouldn't have blinked an eye but for you it was so unfair.
I have spoken to a company called Help At Home who will as a charity give me some respite . even if is only a few hours a week.

I do not expect life to be easy because I know Mum is difficult, but I really hope that once she is with me I can change her medication so she is "alert" and she will understand my boundaries.
I also hope that I will be able to walk away at times and leave her screaming with a carer so I can have dog time, or me time
Who knows, I don´t and that is what this thread will show.

Thank You to all who have supported me so far, I am not sure if I would be in a sound mind (mmmm that is always debatable) with out you <3

When my Mum, at various times during her 10 years of Alzheimers, was aggressive, I tried to put myself into her shoes and find the reason for her fear.

In the early days she was aggressive to Dad, he phoned in tears as he was too scared to go indoors, I went straight round and found her walking up and down wringing her hands in fear and saying a man was in the kitchen and when he turned round he had no face so she threw him out.

After the usual routine of me showing her all her things around her so she realised where she was, I asked her if she knew a man called **.

"Yes", she said, "he is my husband"

I called Dad in and they both hugged and cried for ages.................it was just another cruel trick her dementia played as it slowly took her away.

I am so pleased you are going to have her with you, but please, please don't ever feel bad about asking for help, you are going to need as much as you can get.

My love and respect to you Uzzi <3 <3

Uzzi, I was fortunate that my parents didn't have dementia, it is such a cruel disease. You can already see that you have support on here where you can let off steam at any time. And it is good too that the charity will give you respite sometimes. You can only do your best but I think it is important for you to know that, if it goes 'wrong', if your Mum becomes unmanageable, you have not failed and you should be ready to ask for more professional advice in that case. I did read recently that dementia can be exacerbated if the person gets dehydrated. We're still here for you.

Ann thank you so much for that, I would hope that I would never doubt my integrity but having already done so I am not sure in the future. Dementia is a cruel disease and I am not sure who it is the cruelest on the patient or the carer. Even I have cried for Mum when she is trying to remember. I may not have the best of relationships with her but seeing her like she is breaks my heart.

Kitty I come to you last because my sense of humour has to be first and foremost. So I need your cook book and recipes !!! :-D :-D :-D :-D :-D :-D :-D :-D

After saying that I do appreciate your imput and your insights, I really should try to put myself in mothers shoes more often then I do. You have made me rethink ..thanks
I don´t think life is going to be easy, it never was even before the dementia, now I will admit I am scared I am scared that I will do wrong and I am scared that I can´t do the right thing.

BUT I will get there

I agree a sense of humour is brilliant with coping with dementia.

Mum and I often spent ages people watching in the nursing home. Mum had lost her speech and most of her movement by then, so we had one-sided conversations.

One gentleman was playing the piano really badly, clearing the lounge in seconds. Mum was rolling her eyes at him..........the more out of tune he got, the more she silently laughed, crossed her eyes and poked her tongue out at him.

I asked her if she wanted to move away from the "music" but she shook her head and we both sat with tears of silent laughter rolling down our cheeks.

The pianist was a fellow patient and he finished playing, bowed and smiled at us as he went back to a comfy chair.....and promptly fell asleep.

Bless him :-)

Oh Uzzi, you don't have a piano, do you?

Listen, we all know how hard you have worked to sort out this new stage of your Mum's life and we know it will affect you and T's lives too, so never feel guilty if you get cross or need to offload, or use a carer to get a break. For your own sanity you might have to compromise your feelings sometimes but you are answerable to no one - just do the best you can and no one can expect more. Jst remember that life will have to go on both now and in the future after your Mother has had enough, so just be yourself and try not to let things get at you too often.

My friend is over from Germany this weekend, she has a lovely apartment here in her native city so spends weeks at a time here now her daughter is grown up and independent and her hubby comes with her for a few days then flies off to home and work till it's time to come back and spend more time with her and drive her home. Means she has her car here to get around as she has fm too.

A few years ago she had a lovely big house here where she let her mother live full time, subsidised by the son in law, and she and her family would come over for summer when school was out and short visits too. Her mother was a strange woman, and caused a major row - long story but it turned out she had been trying to poison her granddaughter from when she was small with nasty stories which weren't true about her mother and had said and done a lot of underhand things. She left the house in a fury telling the police she had been thrown out which she hadn't and she got a council flat and never spoke to my friend and her daughter again. My friend sold the house and when she came here she rented for a while till she got the apartment she has now.

My friend has always said that whatever the situation with her and her mother, she would always make sure she had a decent funeral etc when the time came. My friend was already due to come here on Sunday but last week she had a call from her uncle to say her mother had died. My friend was upset because they had been estranged for so long despite her efforts to make things better, but said she would honour her words and pay for the funeral. Then the bombshell was delivered, her mother had written a will slagging off my friend and saying she wanted nothing from her and she would be thrown out if she even attends the funeral.
You can imagine how upset she is, and her uncle will have to attend on his own, he was the only person the mother stayed in touch with, her other brother died a year ago and she didn't go to his funeral.

That old saying You can choose your friends but not your family is so true.

Always here when you want a grumble, Uzzi and of course, when you have good things to share too

Lizxxx

Many of us would admire you for having your mother live with you, and wish you well. If the time comes when you feel that you can no longer cope and she returns to a specialist home, don’t think that you have ‘failed’ to keep your promise – you can care for her just as much as in a residential facility by looking out for her needs as when she is living with you.

If you haven’t realised already, the condition seems worse in the evenings and is commonly known as ‘Sunset Syndrome’. To a certain extent go with the flow if say she says she is waiting for her Mum or Dad to visit. Tell her they’ll be along soon and use a distraction such as offering a cup of tea to redirect her thoughts. She’ll soon forget the distress. Arguing will only make it worse.

Although not 24 hours hands on carer, my Dad used to drive me potty while he was still living alone in his home – I used to write long emails to a close friend as a way of release. If a Blog on here helps you, then every one will empathise and support you.

I am back, I still do not have mother with me ..she arrives Sunday but I have kept a record of things whilst I have been off line

14th June
This is the first full day of being in the new house and she isn´t here yet.
First off I had a phone call from the care home offering me a price for second hand wheelchair and commode/shower chair ..€250 the pair ..I need to see them 1st because they do have some ropey chairs ..many very old that have been donatesd by passing guests- That wasn´t too bad
Then I had a visit from the Nurse from the Help at Home charity I contacted.
The lady was wonderful, patient with the right amount of sympathy but with a no nonsence attitude. I am not going to complain at that. I did feel at one point that I was being assessed Maybe that was my guilt complex about my attitude to mother, I should have told her that I am not really the dutiful, loving, doting daughter who wants the best for her aged parent more like the reluctanct child who has got lumbered with her.
Mind I did feel better once I had told her that Mother and I have had a volatile relationship in the past and still do have one occasionally now. !!! I think the lady appreciated that and did say when I told her that I have a warped sense of humour, that we should get on well then.
The warped sense of humour came from her telling me I would have to buy a hospital bed instead of the beautiful bed that goes with all the furniture, Making sure I was sat down 1st she told me the Price. All I could say (apart from buying second hand) was Oh good because when Mum shuffles off I want this room and I didn´t really like the idea of her using the bed. !!! Well it is a beautiful bed and it matches the furniture. It´s also huge so we are going to have to put it in the larger room upstairs...*groans*
Anyway the other bits .... L raised her eyebrows at what the care home want for their second hand stuff and told me where to buy brand new commode/shower chair for €137 and that they have just bought new wheelchairs for €180 but wheelchair wise where to look on line for them or more to the point advertise on line for them. L reckons I will be inundated with calls. Now that would be great IF I had internet. ha ha.
She is also going to sort out for me 2 girls to do my morning and night paid care as they can´t and I didn´t expect free help for that, But they can and will give me some free respite care where they will take Mum out or sit with her each week so I get time out. mmm I wonder if they dog sit also ? L was very adamant that I need time out not just help. We both grinned when I said that I wanted an area where I would have a bar/cafe where I could walk into and they know by the look on my face whether I needed coffee or L said a large gin before I could say vodka.
L has also pointed me in the the direction of other things that I will need that I hadn´t even thought of.
She did seem worried about how I am going to cope 24/7 on my own ....I told her about you all on here and explained that you maybe in a box but how it was a sanity saving box. I expained to her I wouldn´t be so totally alone as long as I had internet. I have to say L was impressed by you all. We got slightly side tracked about having an internet support group.
Something to look into......
Anyways she left and I started thinking. I really don´t know what I am letting myself in for. A year ago I did but things have changed big style since then. I don´t know how I will cope or if I even can, nor can I imagine how it will all affect my life. Yes I can take wild guesses but until it happens I don´t know how. I can say it won´t do this or that because of this or that, but I don´t know. The only thing I am scared of it hurting is my marriage, I say she can´t because it is too strong and I would see her in hell 1st. but I bet I am not the 1st person to say that either.
I don´t really care about the tears she can cause me with her attitude lol I am getting used to them ...I even carry tissues with me without having a cold. It does come as a shock when I cry for her and what she has lost but because of that I feel I can cope with her, I am learning to have some compassion. In reality 24/7 compassion just may pack it´s bags and exit by the nearest door/window or say sod that and go through the nearest wall and leave for good but I will try to hang on to at least it´s coat-tails
Still only time will tell what is going to happen to us all. As long as I have my little box to escape into and the warped sense of humour I in the words of the great " I will survive " I wil also be back.

Uzzi i know you are doing your best
and will continue to do so
well done for all you have done

i know its not easy for you :-D :-D

19th June
and still she isn´t here. We´ve been in the house 7days now and like the original move date nothing has gone to plan. For the second week OH´s work rota hasn´t been as promised. The builders are still doing Mum´s room and there is dust and work sheets everywhere. I can´t fetch Mums stuff until I have somewhere to put it. I haven´t even finsihed sorting out all of our things as some is back at the campsite waiting for the van to fetch over Mum´s. So I am going nowhere slowly.
Still this thread isn´t about my wonderful move but about Mother.
Yesterday I toodled off to the mobilty chemist to see what they have in store. I went with my list of wants written in Spanish ! and thankfully a credit card.
YIKES it is so unfair that everyday needs for the disabled are so expensive. We found the wheelchair at €180 (€195 with IVA). Although it is the cheapest model they do it does suit our needs. I can´t see the point of getting one for another €100 just because the foot rests are better, I can add a second leg strap to stop her feet faling through. So the arms are not padded but that isn´t a problem I can pad them myself, We bought the wheelchair because although it works out more that the care home wanted for theirs it does come with a 2 year warranty. (Also it is lighter in weight than any at the care home).
I asked about lifting belts ..these are adustable padded belts that you fit around the invalid with mutiple hand grips all around the waist. Great idea but *GULP* over €60. The other thing we looked at because it was suggested was a tranfer table. These are curved structures that fit from 1 seat to another so you don´t get a gap. The one that would make sense for us mainly me and the carer so we can move her alone is one that has a moveable seat along it.
What a great idea I said how much............€319 .........please wait until I get up off the floor and repeat that. Well it is cheaper than a hoist. !!! They didn´t have them in stock so we couldn´t see one so I decided it was prudent to think about it.
The last item we need is the commode/shower chair on wheels ...They carry 2 instock both being over 300 euros. I asked about the €137 one, yes they do it and showed me the picture. Errrummm will have to go and think about it.
The cheap one is fine but it doesn´t have moveable arms and therefore Mum would have to be lifted from 1 chair to the other. No need for the table only the belt but it means that I wouldn´t be able to move her myself at all. I doubt the carer will either.
Today we went to visit her, and checked out the care-homes shower chair. Whoopi do da the arms of it lift up and down, it has a comfy seat (I know this because I have played in it) decent 360 wheels ..so it´s a bit tatty and nearly the same price as the cheap brand new one, but it is what was needed so I bought it, and brought it home today. (hence the play in it already).
I guess I am going to fork out for both the lifting belt and the moveable table because spending the money now will help us in the long run. Not only to make her life easier but to make it easier on us. If the equipment is there the carers might overlook her nature !! lol.
Tomorrow I have to see about buying her a bed. I can´t do internet things because I have no INTERNET at the moment. (STILL) ((that is a story on its own))
Anyway I went to see her today. She was so much brighter than the last 2 visits so the change in medication has kicked in. Shame it hasn´t altered her nastiness to me. She had a right go at me because I said we was only there for the morning and she reckoned I had told her that we were going to have a fantastic night out. She told me I could go, leave *phphhh * and she would go home with Janny ..fine said me I´m going then. Janny had a quiet word and Mum said sorry. Then asked about the house and when would she see it ..I told her next week. (TRUE).
All Mum wanted to know in the whole time I was there was what was I going to do for her that day , but she did say that she was lonely and all she wanted was to be with me, then it would all be okay. Yes prick the eyeballs Mum I thought until I wheeled her into lunch and realised that they had her sat at a table alone with her back to the others. The next table had the dribblers on it who never speak. I didn´t need the eyes pricking, they leaked all on their own. But I had to go with 2 mutts out in the heat and an OH due to go to work I couldn´t stay.
Mum is going to be lonelier when she is with me because there will only be me, instead of all the carers around during the day. She is not going to be going out each day for coffee as she does now, but I do hope to take her for a "walk" most days. Like now she will not have constant attention from me, but unlike now I will be around, most of the time.
I know life isn´t going to be easy for either of us, whether that is just until we get in a routine or for life who knows? I have to hope we can find some common ground and at least make life pleasant. That isn´t quite my thoughts at the moment but hey ho it´s the life I have consigned myself.
The next installment to this will probably be when Mother Moves IN, titles for this could be
When I go Insane, The witch has landed, Nightmare on Calle Afrodita , or just I want my DAD.
Keep smiling everybody because I have my little box and they will not take me away from that !!!

4th UPDATE. 25th June

I still don´t have mother here nor do I have any internet. The internet should have arrived today but will definately maybe here tomorrow, Mother should arrive according to my builders on Sunday 30th June. Yes I do still have builders in and working on her room. Now I am glad they are here as they are taken the calls about the bed arriving and the transfer table being in now, making my calls to telefonica about my internet BUT I am begining to wonder when I am going to get into the room to sort it for Mum.
Today the bed arrived ..once again thankyou builders for a) fetching them to the right address and also for finding out how the bed worked etc. Also today the transfer table is being collected so tonight hubby and I will play with it all...well thats if we have time before climbing in the spa. My lovely, lovely huge hot tub/ spa/ jacuzzi
I still need to sort Mum´s green form out for her medication because the care home has just now told me that they will not provide her with any medication once she leaves there, and I can´t register her here straight away. So there could be a gap of 2months where I will have to pay for meds and claim them back. I have to source nappies etc to see if I can claim for them also.
So much to do so little time.

26th June
Well the builders have left for the weekend now and Mum´s room isn´t fully finished but it is in working order. Today I have given it a thorough clean and on Friday we collect her "stuff" so that leaves me Friday y Saturday to get it sorted for her arrival on Sunday. But today is a good day because the nice man from telefonica arrived and saved my sanity with a phone and internet.

:-D

Alzheimers Talking point is a wonderful forum, masses of information and all the support and tips you could wish for.

All my very best wishes to you in your adventure.

It is a bumpy ride, but worth every step in the long run.

<3 <3 <3

Good luck, Uzzi
xxxxx

Uzzi, I had my mum living with me for 15 years...... (MS). It was hard work and she eventually had to go into full time care but, I knew that I had done everything I could for her - and that made me feel better.

It's not going to be easy but, in the long run, you will know that you have done your very best and should have no regrets.


Mega, mega good wishes to you...............xxxxxxx

Everyone I feel so lucky having you all on here, I want to say BIG thankyou´s.
I also hope that this thread will help others in time.

Now I am off to bed >>>>>> after a play on her shower chair because it´s at the wrong end of the house >>>>>>>>>>

night night all