General Chat

hello me again,
my wife relented once and asked social services for some respite. The council offered a place in a care home that accomodated the elderly suffering from dementia. We went to the care home and were shown around by a member of staff. We were appalled at the conditions, the filth, unattended people wandering around, the washing and toliets are unmentionable! I would not put a dog in there! That did it for my wife, she refuses to talk about it now. It took me weeks to persuade her to at least 'have a look'.
its no surprise that the elderly care in this country is shameful. We all know what awaits us when we get old and frail (sorry to depress you.)

there must be thousands living at home with their children, and saving the nation billions of pounds in care fees. Yet ask for some relief and they offer us that!

the other thing is family. My wife has 5 brothers and two sisters. Where are they now? They are counting their lucky stars that they do not have to look after their mother. Nevertheless, they will be at the funeral with crocodile tears.

sorry for the rant

Bipper not all care homes are like that, my sisters mother in law is in a home in Sutton Coldfield Staffs. She gets the greatest of care, when she does not want to feed herself they help. Carers kiss them bye when they are going home after thier shift. They take them on days out. It is spotless. My sister and hubby looked at several. Spoke with the staff at each and the patence, went at meal times to see how they interacted. You may have seen my posting ealier, my mother has dementia she is in a good home. It is good to let off steam, every now and again. Just you and your wife have a look around. I use to work in an elderley care home, there some just took to the home and never visited by family again. Glad to say that was only 2 out of the other ladies we looked after. You also have to think of your own heath. Take care

Its awaful what you found at the home you looked at--if was really as bad as that you should hav complianed to the local council even private run homes have to meet standards approved by the local authority.

also that it shed a bad light on the many wonderful homes there are that meet with 101%standard of care not just the elderly but for any age that needs 24/7 oversee and the staff are devoted to ensure any resident gets their best possible care.

If youre ever in that that position again--------just go to a home on the spot and ask that you would like to make an appointment with a view to.......if its clean fresh and lively then every chance that is how it is on a daily basis.

thank you Susan and Kay,
I am working on it. Advice taken in.

Bipper - if your wife has numerous siblings, how about approaching each of them for a donation to top-up SS's contribution for Respite Care? The majority of privately run homes approved by SS keep a room for just those occassions. SS in your area publish a brochure of their 'approved' homes. Any good home will welcome 'drop-in' visitors with just a few hours notice. They might ask you to avoid meal times which are very staff-intensive.

Assuming the siblings live fairly local to you, would they not be willing to mother-sit for one day (not necessarily overnight) so that at least you and your wife can have a day out together, secure that your mother-in-law is being looked after.

Depending on her abilities, many SS have day centres where dementia sufferers can have a daytime care once or twice a week.

Do please follow up on the support groups for carers. It sounds as if you both need them.

hello Detective,
her youngest sister used to look after mum some weekends, but expected to be paid to cover costs! I did mention about a top up for better care. The only problem is that 5 brothers equals 5 daughter in laws, and they are not keen on handing over money for this; the boys would i think.
i am going to 'persuade' the OH to look at this again, about respite. She does not like the idea of leaving her mum (the guilt factor)

Bipper, my wife and I are not doing anything on Friday night, shall we come over for a few hoursand look after mum, and you can pop out for a drink etc? WAKE UP! oh, i was only a dreaming lol

Costs? What costs? She's her mum as well!. Sheesh.

Please please have another go at persuading your wife and her siblings. It really sounds as if you are at the end of your tether and its not doing your marriage any good.

Its much better to have sorted out alternative care while you both have the chance rather than have Mum sent by SS as an emergency admittance to a care home you/she doesn't like.

Most of us who have added to this thread have had experience of caring for parents with Dementia, and understand the turmoil both you and your wife are going through.

In my case, my mother was an emergency admission when my father had a stroke. We have always suspected that the stroke was brought on by the strain.

He developed a different type of dementia. A further stroke put him in long-term medical care, but there is still the lingering guilt that by envoking his POA earlier to handle his money, his dependence had increased. That's inspite of family members reassurance that I did the best for him at the time.

His erratic behaviour was already turning my OH against him and he (OH) could see that I was at my wits end.

Uzzi started this thread as a safety valve for her own circumstances. When she comes back, she will surely see why no one is really recommending her to have her mother live with them.

I have read through everything that everybody has said and I thank everybody for their comments and thoughts. I do now need to go away and re-read and think about it all.

I would like to comment to Bipper as he is the one that stands out and I guess in the position my OH is. I appreciate your honesty. I know my OH is already finding my Mum a health hazard (as do I at times) he is thinking about the extra stress that having her live with us will put on me. My life now is already on hold what with mother and an epileptic dog so having here with me won´t make a lot of difference I guess. Like you support your wife he will support me. I think you are brilliant and I hope you realise how many people on here can and will support you during your bad time. Well done for standing solid by your wife when times are hard for her.

Karen, I am glad that you are finally going to get back to your OH ..another OH who has to put up with the MIL with dementia, You have done the right thing.

Liz thanks My mutts are the other problem Minx is now having major fits about every 3 weeks so they are getting closer, and she is having petite mal fits almost weekly so I have to keep a close eye on her so she doesn´t bite anybody. My Mum actually and strangely (to me) really likes Minx (more so than my other dog), so that in itself is a problem because Mum can´t understand why I won´t leave Minx with her. Even though I have tried to explain that to her. She still gets upset because I won´t.

I will get back to everybody but until I do thank you to everybody.

I missed page 2 somehow

Bipper if your wifes siblings aren´t prepared to help with some of the care to give you both respite then tell them to help in the financial side of it. Please listen to the people on here and stay in touch you will get so much support (as you can see)
Take care I don´t know what else to say.

Big hug for you Uzzi, hope Minx will be ok and not bite anyone.
Maybe you should try that old trick (if you haven't already) of writing a list of pros and cons of having your Mother living with you - get your o.h. to help - and that might make you see the way more clearly.

Best of luck, hon, and to Bipper as well.

I suppose I was lucky that my parents, altho physically unwell at the end, were both lucid and able to stay independent as much as possible, Dad only became confused when he was on Morphine in the last days of his battle with lung cancer. He was sedated for the last three days of his life so we couldn't talk with him but up until the morphine confusion, he was able to chat with us, bless him.

Lizxx

Uzzi, I hope that you can take all the advice given here and don't have your mother live with you.You might think that your life is on hold now,but it's nothing compared to the strain that you'll be under living with your mum.As people have said,a promise is not a promise,and people and circumstances change,and your ability to cope.You don't want to continue until you're at breaking point,having
a mental or physical breakdown to change the situation,and get the pressure off yourself.If you ensure that your mother has the best possible professional care,24/7,then you are keeping your promise.You can still visit her frequently,and ensure that she is being well looked after.Don't feel guilty,you are not neglecting her,but doing the best that you can under the circumstances.Good luck!!

Bipper, I really feel for you,I hope that you can sort out those selfish family members to take some responsibility for their parent-one day they will be old too--and may need the same sort of care.How would they feel if their children treated them like that? They seem to have forgotten that!! They do need to be persuaded to take some financial responsibility to take the pressure off you and your poor wife.Good luck,too.

My OH and I have had experience with one parent each having dementia-my OH's Mum, and my Dad,both went into homes,in my Dad's case especially it was heartbreaking to see the decline of this once very intelligent man into a very confused and at times quite belligerent person.My MIL was very childlike,thought that she was an 11 year old child,and that was heart breaking too, seeing her decline also.Now I suspect that my Mum is in the early stages of dementia,she's 90,so we have to go through it all over again with her.She is in a very nice nursing home and is well-looked after,I visit her once a week.My sympathies to everyone who is looking after a parent with dementia,or has one-one day that could be us,at the mercy of our own children.

Margot.

Sorry, hope I haven't killed this thread!! :-( :-( Margot.

MargarettawasMargot you haven´t killed the thread it will come and go ..it´s a difficult subject.
I´m not sure if I will take advise on not having Mum with me, not because I don´t agree but because there are other problems coming up.

Det I do understand what everybody is saying and deep down I know that I won´t be able to manage long term.
I´m finding things difficult now as I have had a rapid come to terms with Mum having dementia rather than a slow getting there. I have the problem that if I don´t have her with me then I am going to have to send her back to the UK and that I don´t want to do.

Liz thanks I should be pleased that Minx now doesn´t appear to want bite people with petite mal fits she has just moved on. She had another major fit yesterday which is quicker again, we also think she has had several petite mal fits that we haven´t confirmed. Yesterdays was not as violent as some but lasted much longer and the valium didn´t work as quick. So we are off to see the vets next week to see what what they think. I really don´t want to put her on full meds yet.

And yes that is the other problem with Mum, my mutts are my kids and how can I cope with both.

I do hope Bipper comes back as he needs as much support as I do.

I've not had this experience myself but I have seen what has happened with others who have and how things turned out.

One was a single man who decided to look after his mother with dementia and vowed not to put her in a home. Eventually he had to give up his job, then, as she got worse, he had to give up his hobbies and social life as well because he daren't leave her.....fearful of what might happen while he was out. Over the last 20 years (she is now in her 90s) he has lost his own life and all the plans he had for his own future and retirement. He spent years sitting around the house taking care of her, unable to do more than briefly nip to the shops . Then she had a fall and was hospitalised and then had to go to a nursing home. She doesn't know her son anymore but seems quite happy. However, it is too late for her son who can't realise his dreams or make up for lost time now, as the years of immobility mean he is hardly able to walk anymore and is virtually housebound himself.

The other was a lady who had her hubby's mother who had dementia living with them. Her marriage broke up and she was the one left caring for her MIL.. The poor woman was having to wipe excrement off the walls every day, couldn't work, was just existing on the minimum and could see no way out.

All I am saying is that it can end up being a huge sacrifice to make as you don't know how long it may go on. No-one can make decisions for anyone else, it imust be so difficult, but think what will happen if anything happens to yourself.......are OH's happy to take it on too?

Uzzi, I haven't added because there has been good advice here, and because only you know what you can cope with..but I would like to just add a slightly alternative view to what has been said...not because I think you should or shouldn't, but because it may be something you feel that you are struggling with.

From a friend's perspective , she took her mother to live with her, and became her carer ( not dementia, physical problems ) which she did for some time until it ran her into the ground literally, when she was forced by her own health to let her mother go into a care home.... BUT, she had tried, and she knew she had tried and that was something that perhaps it was necessary for her to do? ....ie 'I tried, it didn't work, but at least I tried and don't need to reproach myself that I didn't try'...

It might be something you have to do, for your own 'conscience'...not that anyone says you should or shouldn't but that YOU feel you must try.

I get the feeling that you are not overly confident in the care she is getting where she is? and if you think the alternative to living with her is to bring her back here and into care then no one will think badly of you at all for being there while she is in care here.

Bit rambly , but I hope you get the jist xx

This is the first visit to the General Chat room for possibly a year or more. I still see some familiar names and send my greetings and love to all. Alzheimers Week in NZ coincided with my 81st birthday so I thought it timely to bring all friends with email addresses up-to-date on our family's progress with Pam's condition I am sharing it with you as well as an encouragement. It is obvious that some are having the very hard time that goes with the territory. Eminent NZ author, Margaret Mahy, died at about the same time and her poem "Ghosts" seemed to sum up the feelings we may have about the changes that will be challenging us in the future so I added this to my up-date to friends..

That Morning Coffee

It was not because the cafe was in Westmere, the district where the elderly gentleman had been born in 1931. Though sometimes now alone at The Rabbit Hole, that June day it was at Meola Kitchen, an earlier favourite haunt where also friendship was served with good coffee and food which he and his wife of fifty-three years had come to enjoy.
Neither he nor his family had been looking forward to that approaching day. His wife would take it in her stride, as she had done with all other of life’s many challenges that had past confronted her.
There was no diary note telling him that that Friday in June 2010 was the right day for separation. The family had been expecting it much earlier but, with their help, those extra weeks, months and years of care seemed to slip by. The incomplete warp of life lay ahead. The weft was slow now. All who knew her loved the incomplete, beautiful tapestry.

His family had all seen the room and wished that it be as homely as a small single room could be for a much-loved mother.
The elderly gentleman had not thought that he would ever enjoy visiting or helping with feeding. But life has a way of teaching even ‘old dogs’ such new tricks. It is a second home to him now. Birthdays and Wedding Anniversaries are special events still.

His daughters ensured that Shelly Beach Lodge was a house like the many loving Homes their mother had created for them.

Alzheimers is not a condition he would wish on anyone. It has been a maturing journey for all to see a loved one slowly separate from those on whom she has lavished her love. He regards those nine years’ experience as a privilege to have been a part, compared with the many alternatives He is still thrilled to hear the loving endearment “Here’s my husband, Bobby Davis” 15 July 2012

(One family’s thought for Alzheimers Week)
PS I am sorry I was not able to include the great photos of family events during the two years Pam has been at Shelly Beach Lodge.

Ghosts
Two ghosts are walking out today
and one I cannot see.
The ghost of what I was before
and what I am to be.
The ghost of what I was before
is still a friend to me.
The other ghost, the one I fear
is what I am to be.
If I could draw the veil aside
perhaps then I could see
the face of this, stranger ghost
the one I am to be.
Yet I am blessed in this I feel
the future’s hid from me
and I must wait to meet the ghost
of what I am to be.
There are two ghosts abroad today
and one I cannot see.
The first a wraith of what I was,
the other is to be.

Margaret Mahy

So moving, Bob, I just hope and pray I stay ok in this respect, my only child, a son, would surely not be able to cope with me with dementia.

Special thoughts for all those suffering and for those whose loved ones are becoming 'Ghosts'

Lizxx


I found a book at the charity shop a while back, called Amazing Grace by Ray Smith, about his journey with his wife as she slowly lost touch with reality. It's inspiring and loving, and well worth reading. He was a brave man and I hope his wife gained from the things he tried to do with and for her, Grace.

Oh Bob what tears you have brought but welcome ones.

Liz I will look for the book but my problem is Mum hasn´t slowly lost touch but a bit too rapid, but I read and therefore I shall look for the book.

I wanted to answer everybody but I am not sure I going to do that, for those I don´t mention by name I thankyou for your thoughts and I do appreciate them.

Rose lol How could I not answer your comments, they read as though you were sitting on my shoulder in my down times. I think and know to some extend that I need to have my Mum with me to say that I tried, but also I fear that she went down hill so fast because she wasn´t with me and therefore she will be better when she moves into my home. I have always known this deep down but it´s not something you own up to that you want it to ease your own conscience.
Hindsight I think my Dad always knew that Mum would go like this hence his warnings and promises. but how difficult is that.
I know you have stayed away from this conversation but I do thank you for joining in.

Dear Uzzi

Tears are a good sign and part of the healing process, (even the best shed them for his love for a friend). I recall the weekend before Pam went into care sitting in the lounge with her, one daughter and a granddaughter. I was playing a James Blunt CD. When he got to "Goodbye my Lover Goodbye my Friend" my own tears flowed uncontrollably. That was two years ago and I thought that that response had past. A young Canadian lass asked me at church the other day who amongst the congregation was my wife. I told her that Pam was in care and surprised myself at having a tear or two when recounting the above incident. It was an encouragement for me to see her own tears from which a strong bond of friendship has arisen.
The advice from the professionals has always been the importance of care for the care-giver. They could not see any good in having to look after two patients instead of one. In accepting this I had a care-giver come in at 6.30am on a Wednesday and Saturday, my two golf mornings, so that I could have excercise and time with friends.

Love

Bob
PS Pam's second name is "Joy" so I pray each morning that the time we have together will be just that. I am never disappointed, but some days are extra special, like today, when she said she "loved me greatly' as we sang to the music, hugged and gave me a several kisses.
PPS I hope you will not think it presumptuous to say that I will add you to my list.
PPPS For you, I really did not mean the kiss part.
PPPPS 30xO (equals a hug each day for a month)

Bob, your story is very moving, how lovely that you and Pam shared such love and still do in a different way perhaps. I am glad you are making new friends and have people who listen and care.

That's what everyone needs.

Hugs for Uzzi as always


Love
Lizxxx