Would like to say Hi!

[hawaii50]

Just joined the forum and wanted to say hi and introduce myself.

My mum was diagnosed with Alzheimer's three years ago after my dad died of a stroke. It was obvious for at least three years prior to the diagnosis. My brother and I take alternate turns of caring for her. This is a huge challenge for me as I immigrated to USA (Hawaii) where our daughter lives just before my mum was diagnosed! I now commute between Hawaii and Scotland - spend 3-4 months in each location. This has been devastating on my finances and career. I used to have a high earning career now I can only do temp work when I am in Hawaii and care full time for my mum while I am in Scotland.

However we are managing as best we can. My mum is now very dependent so my husband is with me on this visit and my daughter now 26 is still in Hawaii. We have put all our stuff in storage and are here in Scotland for a while.

We stay with her in a small house and have all our possessions in one bedroom! She knows who we are through the day but at night time she doesnt always know who we are - she often asks me if the man downstairs has gone away home - or is the lodger about to leave (my husband!) She is highly delusional and entertains imaginery people and pets. Her neice gave her a small soft toy dog recently and it has now become her pet - she attempts to feed it and talks to it all day long. I am hoping it has the same therapeutic benefits of a real pet!

I find it very hard to enter into the delusions but for peace and quiet I often go along with them if they are harmless - however on one occasion it was like a murder mystery event where having dosed off on the couch with jet lag had become murder victims and the police were after her for murdering us! I had to talk her out of that one - and it was very trying and difficult

This is a very difficult journey watching one who was once very capable and loving turning into someone we barely recognise - appearance as well as behaviour (she is now only 7stone 12 having been 11 stones three years ago) However through it all we find a sense of humour and it has been a journey for us of learning patience, being tolerant, not letting anger rise when you are tempted to the limit! You sometimes learn things about yourself that are ugly and need to deal with that too. And we find out that we are far from perfect ourselves and fail often, but we learn to forgive, pick ourselves up, dust ourselves down and try again the next day to be a better carer.

We have a strong faith in God and this has helped us through many difficult days. We have also found that although some days we don't get much sense out of mum she can still sing all the hymns word perfect if we put on a CD with her favourite hymns. There is also a sense of peace comes upon her during these times.

I am in Scotland for the forseable future and will probably need to face up to the reality that my mum is at the stage of needing to go into a nursing home. This is such a hard decision to make - but I have been reading lots of your messages and find them helpful in that nursing homes are not always the dreaded thing that we think they are. We also need to work!! I was denied carers benefit as I am not accepted as resident in this country - even although I looked after my mum for 7 months last year and will do the same this year! I took it as far as my MP but still failed. After paying income tax at the 40% level for more than 20 years this was a difficult decision to understand.

My mum had her 80th birthday a few days ago and we are celebrating with lunch at our local restaurant tomorrow!! Hope she doesn't have a day where she doesn't want to cooperate! Fortunately she can still feed herself and enjoys joining in at family events

I look forward to participating in your forum and getting to know some of you better.

 

[Skye]

Hi Hawaii50

Welcome to TP. It must be difficult caring for your mum from a distance, it's always such a worry. Some of our members are having to cope with this, Jenniferpa in particular.

However, you're now over here in Scotland, and that's not easy either, having to give up your home.

And we find out that we are far from perfect ourselves and fail often, but we learn to forgive, pick ourselves up, dust ourselves down and try again the next day to be a better carer.

I think we can all relate to that one! We do our best, but we're only human, and some days are harder than others.

I do hope you'll keep posting, we all find lots of advice and support here, or just a virtual hug when it's needed.

Love,

 

[Grannie G]

Hi Hawaii50, welcome to Talking Point. Love your user name.

What a sacrifice you`ve made `commuting` between the States and Scotland. It`s dreadful you don`t qualify for carers allownace, as your mother is the resident and you have given up so much.

It is indeed a difficult journey and we all find different coping strategies. I hope you get the support from TP that I have. It doesn`t solve problems, but it certainly makes them easier to cope with.

Take care

 

[soulsmilin]

hello hawaii50

welcome to TP, as some one that has travelled home for the last couple of months to visit and spend time with pops, - not quite as far as you though, only across the country, sympathise with your dilema, the travellin is exhausting and worry when you are not there, I wish you all the very best and have found so much help and comfort on this site, I hope that you find the same

love soulsmilin

 

[jenniferpa]

Hi Hawaii50

I'm in a sort of similar position to you: my mother is in the UK and I'm in the USA (PA). No brothers or sisters I'm afraid, so it's down to me. My mother has stroke induced dementia. To be honest, you're doing what I thought about doing: splitting my life between here and there. However, you must have a more flexible husband than I have: mine is very understanding about me flitting off to the UK on a regular basis, but I finally decided that it wasn't fair to him, the children (I still have one at home) or, frankly, me to do this, quite apart from the expense (and I know how that goes). Mummy was in an extra care residential living unit, but I have recently moved her into the nursing home to which this flat was attached. She had become unable to weight bear, which mean't getting to the bathroom without assistance was not possible, and the extra care facility didn't have night staff. I can't say I'm happy about this new situation, but I suppose I am content. At least I know she's not going to fall and no one find her for several hours (which has happened and resulted in several hospital stays), and she is eating better than she has been, so it's O.K. if not great. She likes the staff in the nursing home, and actually gets more contact with people, which as she can no longer read or watch TV is a big plus.

I try not to think about all the times she told me she never wanted to go into a home. I did consider bringing her over here, but as I expect you know, in order to get a visa I'd have to accept financial responsibility for all her medical bills, and that's not a small thing when you're talking about an 89 year old with multiple health problems. Also, I am not a saint, and I doubt my ability to care for her 24/7 365 days a year. In a very real sense, she is no longer my mother: I love her and feel responsibile for her but much of what made her the person she was is no longer there. She still has her sense of humour though.

Anyway, welcome to TP: we're all trying to get through this together.

Jennifer

 

[hawaii50]

Thanks for all your messages

Thank you all for welcoming me to the forum - it is so good know that there are others here that no EXACTLY what we are going through!
Jennifer - your situation seems so similar to mine and I feel for you especially as you still have a child at home. I couldn't have done what I am doing if my daughter wasn't self sufficient. Fortunately I do have a saint of a husband who has supported me all the way. For the last three times I have been in Scotland he has stayed in Hawaii and worked to help finance the airfares etc but even at that my credit card is building up!! We also really miss one another every time we separate. He felt it was time to come back with me this time as my mum has deteriorated. But we feel as though we don't have a home any longer and no point to put down roots in either location when we keep getting uprooted! We no longer have home and possessions in Scotland so it is not so easy to move back - we have rented out the apartment we own in Hawaii - to sell at the moment is not good as the market has died and paying 6% real estate fees if we sell will eat into our remaining equity (we have already released equity to help fund our double life!!) We have already spent all our savings we had for our own retirement!
I am getting to that place where I believe that my mum will have more social contact and care in a nursing home and we have fund one that is beautiful and I know the people who run it but it is a bit more expensive that the others! However my mum has her own ex local authority house a reasonable pension from my dad and some savings so I believe if we sell the house she can afford it - all be it the money will be all used up in about 10 years!!
On the upside although my mum's memory has gone she is in reasonable shape elsewhere - no medication except anti histamines and inhalers twice a day. I find it amazing that lots of the "ailments" she had have now disappeared now that she has forgotten she has them!! She is light and frail but can still walk around and still can dress (although I usually need to turn things the right way out and remove at least 4 pairs of popsocks on each leg) I try to let her do everything for herself first even if I need to redo everything aftwerwards. She still attempts her housework and spends hours cleaning the sink every day!
So hang on in there Jennifer I think you are doing the best you can do and I think that is all we can do. Our duty of care is to make sure they are looked after and are comfortable. Our duty of care is also to our husband and children first I believe - if they don't go along with it then I believe you have to respect that.

I took my mum to Hawaii last year for 3 months to let her spend time with my daughter before she forgot who she was. She enjoyed most of it but it was an absolute nightmare for me. However I know I will forget the difficult things and remember the nice times we spent watching the ocean and surfers! I would never consider doing it again. She accused me of kidnapping her during the first week as she was so disorientated - amongst other heart wrenching things!! However after about 3 weeks she settled down but she never really knew where she was and insisted we were going to places in Scotland! The return flight was a nightmare - took us 36 hours due to delays!! We did have 7 hours in a hotel to split the journey but that just added to the confusion. My mum had been to Hawaii three other times in her life so I thought I would risk it. Like you Jennifer you just can't think of it permanently because of the visa restrictions and medical costs.

Anyway I have rambled on enough and my mother has just popped her head round the door wondering where I have got to so I better go.
Take care.

 

[DeborahBlythe]

A few thoughts

Hello Hawaii50, I've been reading your thread and a few thoughts cross my mind. Forgive me if I have got my wires crossed a bit. Also, as she is in Scotland, the things I am going to say may not be fully applicable. Perhaps our members from Scotland will put a fuller perspective for you. However, here goes. I'm going to make a distinction, in the following paragraph between nursing care homes and residential care homes. The latter do not have nursing staff on duty 24/7. Nursing homes are usually for people whose mobility is very limited. (That at least was the main criterion in the part of London where my mother found herself. May be different elsewhere.)

Firstly, your mum does not necessarily sound ready for a nursing home. She is ambulant, busying herself with washing up and only takes anti-histamines and inhalers. That treatment could possibly be administered by carers or visiting DNs in a residential care home, I think and your mum would have a more normal sort of existence for the moment. Whilst the home you have found sounds beautiful, it also sounds very expensive. With a fair wind behind her, your mum might live longer than the ten years which you think her money would support her through. I would be tempted to look for a residential care home which also has a nursing wing attached, then your mum might be able to move from one to the other when the day dawns that nursing care is the priority without too much disorientation. I'm not saying that residential care is the cheaper option, necessarily, but that it might be more appropriate for her at this stage. If it turns out to be cheaper than your original thoughts, then that could be helpful in the long run.

However, having said all that, in England we try to seek multidisciplinary assessments first,(community care assessments) through the GP (or anyone else connected with relative's care in a formal way), which determine what the care needs are. This would be useful to get even if it does not result, because of the person's healthy finances, in a subsidised placement. The assessment should ' get her into the system ' and would give you an idea of what level of care to be seeking for her. In England, people in residential care who have some non-urgent medical needs can have them attended to by visiting District Nursing teams. The administration of most medication is also usually within the scope of specific carers in residential homes, (although in my mum's case there was a dispute about whether or not the carers could adminster oxygen. The residential home grudgingly conceded that it might be able to do so at some stage but said that its carers were not trained at present to do so, and they could not say how long it would be to train them up.)

If, after a multidiscplinary assessment, your mum is thought to be more suitable for nursing care, then there is, in England, a process of assessing how far her needs can be subsidised by the NHS and how far they are thought to be non-nursing and should be financed from her own resources, or state subsidised if her savings are low enough. I know that things are different in Scotland and having looked through a few of the factsheets on the AS main site, some of them say ' Different arrangements apply in Scotland'. I think this may be because in Scotland, personal care, (as well as nursing care) is also state-subsidised. I strongly urge you to talk to an AS adviser on Monday 0845 300 0336. to find out more about the care/nursing home assessment process in Scotland.

http://www.alzheimers.org.uk/Caring_for_someone_with_dementia/Residential_and_nursing_care/continuingNHShealthcare.htm[/url]

 

[hawaii50]

Hi Deborah
Thanks for your informative reply.
I have researched what is available in Scotland and we are fotunate to have what is called Personal Care Allowance which is £145 per week plus £60 if they need nursing care. My mother although ambulatory cannot do anything "successfully" for herself and cannot be left alone for longer than half an hour. Her housework is a busying activity and still needs doing when she is finished!! She is also up during the night not knowing that it is night time etc and can't find her way to the toilet.
The care home I have found has all stages of care ranging from the independent to the locked wing for dementia patients. - the locked wing is a set of double doors that lead to rooms that are identical to the rest of the facility - so when the need arises to move she probably wouldn't even notice that she had moved. There are registered nurses available for the whole facility 24x7 (hence the cost difference I assume!) They assess each client for a month and decide which part of the facility best suits them. As the condition deteriorates they are eventually moved into the secure wing but are still regularly taken out to join others for activity sessions if they are willing to participate.
The local authority in Scotland also picks up the total cost of care after you get down to £20,000 of savings - they pick up the total cost of care in this nursing home for people without funds as well for those fortunate enough to be admitted. There is also another residental care home where my neice works but I have checked it out and it just feels like a warehouse for the elderly - taking care of them but that's about it - and it costs £500 per week! The other place costs £630 per week.
I am waiting for social services to arrive to do an updated assessment - it has been two years since their last visit. I have been advised not to enter her into care facilities until they agree that it is time to do so or we do not get help with the Personal Care Allowance so readily! We are prepared to take care of her until social services agree that it is time to go into care.
Once I am able to work again I don't mind subsidising the cost either which would make her funds last a bit longer.
If there is anyone reading this from Scotland who knows any more about the system up here I would welcome their thoughts.

 

[Skye]

Hi Hawaii50

I'm in Scotland, but already you know more about the system than I do! I did look at nursing homes a few months ago with a view to respite care, but decided against it for the moment. I'll watch your posts with interest.

 

[DeborahBlythe]

Hi Deborah
Thanks for your informative reply.
My mother although ambulatory cannot do anything "successfully" for herself and cannot be left alone for longer than half an hour. Her housework is a busying activity and still needs doing when she is finished!! She is also up during the night not knowing that it is night time etc and can't find her way to the toilet.
The care home I have found has all stages of care ranging from the independent to the locked wing for dementia patients. - the locked wing is a set of double doors that lead to rooms that are identical to the rest of the facility - so when the need arises to move she probably wouldn't even notice that she had moved. There are registered nurses available for the whole facility 24x7 (hence the cost difference I assume!) They assess each client for a month and decide which part of the facility best suits them. As the condition deteriorates they are eventually moved into the secure wing but are still regularly taken out to join others for activity sessions if they are willing to participate.
The local authority in Scotland also picks up the total cost of care after you get down to £20,000 of savings - they pick up the total cost of care in this nursing home for people without funds as well for those fortunate enough to be admitted. There is also another residental care home where my neice works but I have checked it out and it just feels like a warehouse for the elderly - taking care of them but that's about it - and it costs £500 per week! The other place costs £630 per week.
I am waiting for social services to arrive to do an updated assessment - it has been two years since their last visit. I have been advised not to enter her into care facilities until they agree that it is time to do so or we do not get help with the Personal Care Allowance so readily! We are prepared to take care of her until social services agree that it is time to go into care.
Once I am able to work again I don't mind subsidising the cost either which would make her funds last a bit longer.
If there is anyone reading this from Scotland who knows any more about the system up here I would welcome their thoughts.

Hello again, I understand what you are saying about your mum's need for supervision. In England, there would still be a clear view, I think, that the supervision did not need to be 'nursing' supervision. People with dementia with wandering tendencies certainly need to be kept an eye on, but that doesn't have to be by nursing staff and probably wouldn't, I think, necessitate nursing care, on its own.

Now I don't want to be a crabby old spoilsport here, but another couple of thoughts occur. The updated assessment from Social Services is going to be more independent than the assessment after a month's stay carried out by the home. Secondly, your good hearted statement about being prepared to look after your mum until SS decide it is time she should go into care sets all manner of alarm bells ringing. If you tell SS this, or even hint at it, I'm willing to bet they will string you along for as long as they possibly can because you are doing their work for them and they won't consider there is any urgency with you kindly stepping into the breach. I'm not saying you should lie to them, but I think you should be clear what the limit of your commitment can practicably be and tell them because otherwise, they will, I'd be ready to stake money, let the whole thing ride until you are at the end of your tether. If someone can say this isn't so, well so be it, I'm a mean old doubting Thomas, but in this world: the world of getting the best for your mum, you may have to be quite steely not to say wily.
As for the authorities picking up the whole cost of care after the money runs out, again, check your facts carefully. That is supposed to happen here as well, but in practice there can be tussles especially if the home was not deemed to be suitable for referral at the outset because of its high care costs.
Sorry to be a right old wet blanket. I could be wrong, but better to be aware of some bitter experience than to plough on uninformed. Good luck

 

[jenniferpa]

Oo yes, I would echo what Deborah has said: if you let SS's think that you will carry on until "they" say so, you'll be carrying on for ever. If you read past posts, you will find that some people have carried on until they've been close to (or even at) a nervous breakdown, and in at least some cases, have been reduced to going to social serrvices and refusing to leave until they've got some resolution; or alternatively, calling social services and breaking down in tears. I would strongly suggest that at some point when you feel rational about the whole thing (and I know those can be few and far between) you, your husband and your brother sit down and make a list of those circumstances under which the situation would become untenable. I suggest a list, because these things can sneak up on you, and having something written down can help clarify your thoughts.

Jennifer

 

[DeborahBlythe]

.., as she is in Scotland, the things I am going to say may not be fully applicable. Perhaps our members from Scotland will put a fuller perspective for you. However, here goes. I'm going to make a distinction, in the following paragraph between nursing care homes and residential care homes. The latter do not have nursing staff on duty 24/7. Nursing homes are usually for people whose mobility is very limited. (That at least was the main criterion in the part of London where my mother found herself. May be different elsewhere.)

Forgive me for quoting myself here. I re-read my original post and found I had written the opposite of what I intended in the bit distinguishing between nursing and care homes. I then corrected it but for some reason TP site is treating me oddly today, making me log in and refusing to accept amendments. Thought I had got it sorted but looking back this pm see that my earlier amendment had not registered even though my second post had. Anyhoo, the first para of my first post now reads as I intended it to. Amendment picked out in bold above. Sorry for any confusion. Blame it on a (worrying) senior moment.
Thanks Jennifer for your corroboration of a few bits that make sense!

 

[hawaii50]

Thanks for all the good advice. I really appreciate it. My willingness to look after my mum is in my heart but I know after the 7 months in a row of living with my mum last year I was not in good shape! I had five months away and have been back 6 weeks and feel as if I never had a break! My heart goes out to all of you who are sole carers that have no breaks. I can only imagine how much harder it is. I mentally have always known that I am going to get a break at the end of my turn - even if it turns out to be longer than I had anticipated (which it did last year) that knowledge goes a long way in helping me to cope.

As far as social services are concerned I don't exist as they disallowed my care allowance for being a resident of the USA. (I was a UK citizen for 50 years before that and still am!) I have contacted SS to say I am here to sort out my mums care and can no longer afford the 2/3 flights a year that I have been making for the past three years. My brother suffers from very high blood pressure and is no longer willing or able to look after her if I leave so I will keep you all up to date how things unfold over the next few months. I know my mother does not yet need nursing care but she does need care 24x7. We fully expect to need to pay from her assets and only need the ok of social services to pay the personal care allowance - and when that happens they take away her attendance allowance so they actually don't end up paying all that much extra - if I ask for personal care in her own home which she is entitled to it would end up costing them the same.
I think from reading all the stories on TP it appears that we have it a bit easier in Scotland than in England. (or maybe I should say in the area I live as that is the only area I have knowledge of)
My mum's sister who died a few weeks ago was 83 with heart problems, diabeties and was almost blind but lived alone and very independent still catching the bus etc- her children lived overseas and we were limited in helping because of my mum. Social services were wonderful to her for the past two years and she had everything she needed including daily carers, shoppers, bathers, nurses coming in to give her insulin daily etc - they immediately put her into a care home for respite in January when she developed a bad chest infection and couldn't look after herself. She subsequently developed pneumonia in the nursing home and died of a heart attack. Once in the home SS evaluated her on a regular basis and there was never any question of sending her home. They picked up the total cost of that three month stay (and my aunt had a lot of assets!)
Anyway enough for tonight!! I know I am likely in for a rough ride with SS and value all of your support for that journey!

 

[hawaii50]

Forgot to thank you Jennifer for your suggestion of sitting down with my brother, sister in law and husband to thrash out the detail! I have been putting this off!! My brother goes to France soon (his wife is French and she has an 89 year old mother who has just had open heart surgery) for a few weeks. As soon as he comes back we intend discussing how we intend taking things forward. I have been blessed to have my brother take joint responsibily as I know many don't, I also have a lovely sister in law who takes care of my mum as if she is her own. However his high blood pressure makes this a huge challenge for him and I don't believe he is well enough to continue care when I need to go back to US. I do need to go back within a year if we want to keep our greencards - it took a long time to get them!! My multiple departures and long stays in the UK over the past few years are already a potential threat to my residency.

 

[alfjess]

Hi Hawaii50

Here is a link which tells you about care home fees in Scotland.

http://www.counselandcare.org.uk/assets/library/documents/52
_Care_Home_Fees_paying_them_in_Scotland.pdf


From what I understand, the only way that care home fees are fully funded is if your Mum has less than £12,250. For every £500 between £12,250 and £20,000, there is a charge which she has to contribute.

I have PM ed you. hope you don't mind.

Alfjess

 

[noelphobic]

http://www.counselandcare.org.uk/su...52_Care_Home_Fees_paying_them_in_Scotland.pdf

I don't think the website link came out correctly in the last post so am reposting it here.

Brenda

 

[alfjess]

Hi

Thanks Noelphobic, don't really know how to do links.

I also think the info I gave was wrong. It is not £1.00 for every £500, but £1.00 for every £250 above £12,250

Sorry

Alfjess