my nan isn't my nan anymore

[angel pat]

i went to see my nan in her new home today. i hadnt seen her for a couple of months. she had a fall a few weeks ago and had spent 2 weeks in hospital. she has gone down hill very quickley since then. i was so shocked when i saw her that i had to leave the room to cry.
she was just lying in bed, mumbling to herself and constantly fidgiting. she didnt know who i was or my sister or mum.
she has had alzheimers for about 10-15 years now but is gettting worse by the day.
i would just like to know if anyone knows how long this will go on for?
is there an end in sight for my nan from this terrible disease?
does it sound like she is in the last stages of alzheimers?
thank you

 

[Brucie]

Hello angel pat and welcome to Talking Point

you ask the unanswerable, I'm afraid.

People with dementia often swing from good to bad and then back again, so not even the doctors can really say how long a patient has left to them. No-one knows.

Patients get worse really quickly when they fall, or have an infection, or flu etc, and/or are moved from familiar surroundings - but this does not mean they won't recover to some degree.

my recommendation at present is that you simply take things a day at a time. Treat each day as if it were her last, and cherish her - because it really still IS your nan, though the dementia has compromised her ability to show that. It won't be easy, but I always think how much more difficult it is for them, isolated by the disease, and stuck behind the wall of dementia. Our pain must be less than theirs.

Try to make contact with her in some way - if only by holding her hand, or talking to her - even if she appears not to listen.

Keep in touch with Talking Point as well, to ask questions, seek advice, or to update us.

It is going to be difficult for you, as it is for all of us.

Best wishes.

 

[angel pat]

thank you for your reply brucie,
your words were of much comfort.
i have been thinking about my nan all day, the many memories i have-christmas times with her, saturday nights watching 'murder she wrote' and eating pizza!
i felt yesterday that i did not have the strength to see her again so soon but after what you said i do feel slightly selfish after all, she is the one with this disease. she needs me now more than ever and so does my mum.
i will go to see her again next week, hold her hand and tell her what she means to me. i know she wont understand anything i am saying to her but i know deep down she will appreciate me just being there.

just a quick question, does anyone know whether alzheimers runs in families?
my mum would know but i really dont want to ask her
thanks again
angel pat x

 

[Margarita]

http://www.alzheimers.org.uk/Younger_people_with_dementia/PDF/wakefieldyodp.pdf

http://www.alzheimers.org.uk/swish.pl?query=fact+sheets+Genetic+&submit=search


I think if I got it right , when you ask

does anyone know whether alzheimers runs in families?

it can be if the person get it under 65 , I found the above links on the Alzheimer's society web site






I just like to add that I went though what your thinking now about your Nan not being your Nan with my mother , also about if I would get AZ , yes it’s a shock seeing the person you love look so different , it does get to you emotionally it did to me , my mother not at the stage that your granmother is



But today I went to a care home that my mother was in for 3 mouths emergency respite, I was amazed that a lady who has dementia, would refer to me as Isabel daughter, all ways asking about me that she remember me when she saw me , also how when I touch people hands , talk to them how they respond to me, you never know really when you tell your grandmother, your happy memories that you shared in the past she may respond , she may not , but if you don’t give it a go your never know .

Hope you share with us how your Visit goes. also like to say No, you do not come across selfish

 

[LISAH]

My Nan help

Hi Everyone,

This is my first post! please hope someone can help, here goes:

My Nan was admitted into hospital 3 months ago with diverticulitis, to cut the story short she was in for 2 weeks, not eating or drinking and after 2 C T scans found out she had a ruptured bowel which they operated on and she now has a colostomy bag. She continued in hosp but was on oxygen and food bags as she STILL was not eating. Eventually she saw consultant who after another CT scan and blood tests advised her to see a Geriatric consultant. They diagnosed her with dementia (even though she was not nutrionally ok and also had a urine infection) as she was so confused, also they done mental tests on her i.e address which she gave a very old one they said after an op dementia can come on. We have found this so hard to grasp as my Nan had no signs of probs before this. After 3 months she has been put in a Nursing home as she still needs her dressings changed from op and a stoma nurse. She wants to come out and is very distressed as she can't understand why she is in there and other patients are Not like her! we are telling her its because she hasn't been eating she needs to get strong, but prob is she is in this very nice home for a few weeks until they find her a placement, but my Dad (her son) wants her out, she is convinced she wants to go home and no - one elses home, it is so distressing as she is like normal but comes out with the odd phrase, my family is so upset do we take her home? do we tell her what shes got so she may understand why she cant go home? either way she is going to be upset also what help do we get if she moves in with someone.

I would be grateful for any advice

Lisa

 

[connie]

Hi Lisa, not quite sure what to say to you but:

personally I would advise that you get more support behind you before you bring your dear nan home (to any bodies home).

It is a little easierto get care packages put in place before anyone is at home. I would not wish to appear negative, but I have found that once you are seen to be managing at home, extra help is hard to come by.

Has your nan been throughly assessed?. What help will she need when she returns home? Who will be her principal carer? (Unfortrunately, dementia can start from an operation in the elderly, somehow makes it harder to take in when onset is so sudden.)

Ask a few more questions, both here and in the home where dear nan is now.
Sorry, no answers, but thinking of you,

 

[LISAH]

My Nan Help

Thankyou connie,

My Nan was asessed in hosp with Ct Scans one Consultant said they would not make the diagnosis as she had been through an ordeal and thought it was delirium then as she was on holiday another came and made the diagnosis through the CT scan (although the first consultant said the CT showed no signs, the new consultant said it did) very conflicting. She was assesed on mmse but she had not eaten for nearly 3 months properly and had urine infection. They asked her address she gave her very old one and Dr said Yes she has dementia 1 week later my Dad asked and she gave her full address + p/code. My Dad wants her out and his sister said she would look after her at her Mums home as she is divorced and lives on her own, but she now feels this maybe too much, she begged my brother to take her home last night and he nearly did, this is truly heartbreaking. My Dad works so does my Mum, but at this moment in time if my Nan was in her right state of mind she would say Take me home and try if it doesn't work at least you've given it a go!this is what my Dad can't understand with his family no-one is willing to try, come a few weeks when she is offered a placement what do we tell her? she thinks she is only in there to get stronger? She is the same Nan just a little confused, very minor confusion like is she staying in a hotel? she will have her lunch then pop down her sisters house .

Also my Nan is not a great mixer, and she is distressed at looking at people who unfortunatly do have this terrible condition. My dad phoned social services up and explained if he wants to take her out what care is there? They said you would need a district nurse,stoma nurse to attend to dressings etc but this has to be arranged through the nursing home and could take up to a week. then social services will come around and assess the situation.

Thanks for listening and any help would be appreciated.

Lisa

 

[Lila13]

When my mother was discharged from hospital last November I was told beforehand that there would be an intermediate care team arranged by the hospital, but then when she got home there was nobody, and it took many phone calls to get the help she needed. (Complicated by the fact that when Social Services phoned my brother said we didn't need them as we were "going private". The private carer was someone from an agency who charged £14 a visit just to pop in and say hello.)

Lila

It is a little easierto get care packages put in place before anyone is at home.

QUOTE]

 

[LISAH]

Hi Lila,

My Nan was told because she was doing well in hospital they were going to send her to this nursing home (lovely place) to keep up her physio and care. When she arrived there is no physio's to help as they say she is interim and needs to be intermediate. So in fact part of us feels that we have put her through all this distress because we thought she was going to get physio etc but infact she prob could be doing all this at home, social worker told dad how would we feel if we took her home and she has a fall and needs a hip replacement that would be on your conscience. My dad replied - it can't feel any worse than when i had to leave her here the other night and the look she gave me will stay with me for the rest of my life. We just want to know if she came home what help would we get but we feel eveyone is against us in this idea and we are going around in circles. We just want to look after her and make sure she is ok.

Lisa

 

[Nell]

My Dad wants her out and his sister said she would look after her at her Mums home as she is divorced and lives on her own, but she now feels this maybe too much, she begged my brother to take her home last night and he nearly did, this is truly heartbreaking. My Dad works so does my Mum, but at this moment in time if my Nan was in her right state of mind she would say Take me home and try if it doesn't work at least you've given it a go!this is what my Dad can't understand with his family no-one is willing to try, come a few weeks when she is offered a placement what do we tell her?
Lisa

At the risk of offending you and your Dad, I have to say that no-one can expect "some one else" to care for a patient with AD. If it is of such importance to your Dad, he may have to think about ways he could do it himself. Possibly he could take some long service leave? or leave without pay?

All the things that might be making it impossible for your Dad to care for his mother are the things that everyone finds make it impossible for them too. Even if it seems that the playing field is uneven (eg. your Dad obviously has dependents such as you, and maybe other relatives don't have dependents) the sheer magnitude of this commitment is not one to be taken lightly.

This situation is one many of us have faced and we probably all feel like you and your Dad. It is soul destroying to be unable to do what you feel in your heart is the best for your parents (or grandparents) and the guilt can tear you up inside. It is really important to realise that everyone is entitled to quality of life, and it is this fact which might mean your Gran has to stay in a home. If this happens, there is much you can all do to make it as positive experience as possible for her - and for yourselves.

I'm sending you my very best wishes in this very difficult time - and I truly hope I haven't offended you. Nell

 

[Lila13]

Falls can happen anywhere.

I don't think anyone can advise you what to do without the full facts, (and it doesn't sound as if it'll be your choice anyway), only hope she'll be OK wherever and hope you are near enough to see her often.

Lila

Hi Lila,

social worker told dad how would we feel if we took her home and she has a fall and needs a hip replacement that would be on your conscience.
Lisa

 

[LISAH]

Thanks Lila and Nell,

Nell you did not offend me, i understand fully what your saying, i have thought this myself everyone is entitled to a life and this would be very restricting to look after her. My dad saw my Nan last night and she was sitting in her room, they walked in and she got up flung her arms around my Mum and was tearful saying "i thought you had all deserted me,thank god you're here". My dad took my nan for a walk around the nursing home (outdoors, first time in 3 months she has been out) also she is now walking unaided without her zimmer frame, she has only been walking again for the past 2 weeks. They got near the car park and said to my dad, please put me in the car and take me home i promise i will never go outside once i get home, (as if we are punishing her ). My dad feels she is getting stronger and also she is showing more signs of thinking straight, in your experience does this happen? she has told him again she wants to go back to HER home and noone elses's, we maybe have another week before they find her a placement, can anyone advise on how we break the news she is not going home. Do we tell her whats wrong with her or will she go down hill faster? either way this is going to be a terrible ordeal for her. I am spending most of the time looking for answers to questions on the internet, and am finding all your advise really useful. Lila she has visitors twice or three times a day at the moment, will this be restricted if she goes in a residential home? as the nursing home is temporary so they are ok with this. Is there anything to be wary of if she is offered a placement?

Many Thanks for all advise.

Lisa

Thankyou Lisa

 

[Lila13]

There are so many questions no-one can answer, each person is different, each set of family circumstances is different.

My mother seemed to get stronger and mentally clearer from November to April, then in May suddenly died and we don't really know why.

She had also promised not to go out alone after dark, but forgot or no longer knew how to keep that promise.

You have to ask the people at the nursing homes if they have any restrictions on visiting hours. I don't suppose most residents in homes do have visitors so often, but that's because of distances and family members having other commitments, or not wanting to visit.

Lila