After several weeks of reading many threads on Talking Point, I've decided to join. I have already found a great deal of helpful information and comfort from this site.
I live in the States and although there are clearly differences in our legal, medical and social services systems, dementia and the feelings it engenders transcend nationalities and borders. So far this is the most active, supportive, and helpful online community I've located and so I'm taking the plunge. I hope you have room for a Yank!
My mother is 72 and has recently been diagnosed with some form of dementia. I've not gotten much useful information from the doctors about what sort, or how advanced it might be. My not-expert guess is that she's somewhere in the middle stages and that it's been going on definitely for the past two years, probably more like five years, and perhaps as many as seven. Her short term memory is shot although she can compensate (sometimes) to an astonishing degree, so much so that you could have a short conversation with her and never guess about the dementia.
A move from living independently with no services to an assisted living facility (in this case, a care home where some nursing care is provided) occurred just under a month ago. My mother was found early one morning outdoors, without a coat (cold weather, about 30 degrees Fahrenheit), bruised, disoriented, and confused. She had clearly fallen. She was taken to the emergency room (I think you say A&E or Casualty?) and then admitted to hospital, where she spent almost two weeks in the Senior Behavioral Health Unit. (In the States, we used to call this the geriatric psych ward, but I don't know the British English term.) I don't know about your system, but this was a long stay by our standards. She was thoroughly evaluated and it was determined she could not return to living alone, or with services, but required a facility. On the advice of the doctors and social worker, my husband and I chose a care home in the city where we live, about 100 miles/2 hours' drive from where she had been living. She'd been on her own in that home by herself for the past 12 years, with her mother (who also had dementia and my mother was her carer) for about 8 years before that, and has lived in that city for about 50 years.
In addition to dementia, there are chronic health problems such as high blood pressure, high cholesterol, arthritis, and the list goes on. One of the major issues about her living alone was that she couldn't manage her medications properly; another was nutrition; a third was general safety. She had refused all discussion of home help, assistance, cleaners, you name it. (With a firm, "there is nothing wrong with me, I'm fine, and I just want to be left alone.") Of course she wasn't fine; the place was unsafe and filthy. She had been isolating herself and was not terribly social to begin with, especially since she retired.
My mother is not taking kindly to the transition, although it's better than it was in the beginning. I know she is finally somewhere clean and safe (I have slept better in the past five weeks than I have in years, not worried she will burn down her building or get in the car and have another accident and maybe this time kill somebody or herself). I know she cannot manage alone. I know there was no possibility of any other living situation after her discharge from hospital. I know it is much better for me not to be making that 200 mile round trip drive every week to take her to the doctor and the store et cetera. I know she will have much more stimulation and social interaction in the care home than she has had for YEARS. But she is unhappy (understandably) and although I try hard not to feel guilty, sometimes it's inevitable. Her crying and longing to go "home" are very painful. She has no memory of her hospitalization and doesn't believe us when we tell her what happened. I am trying the compassionate communication thing but am not very skilled at it yet.
We are also trying to learn how to cope with her unpredictable behavior, which of course I know now is the dementia rearing its ugly head. Multiple phone calls. Inconsolable crying. Horrible accusations of "kidnapping" her and "locking her up" so I can "steal all the money." Endless repetition of how lonely and miserable she is, and she hasn't eaten for days, and nobody gives her her medications, and she hasn't seen a doctor, and on, and on, and on. It's a very nice facility and she is well looked after. She is eating better than she has in years, there is no chance of over- or under-dosing on her meds, and the staff reports she is social with them and the other residents and participates in activities and meals.
I do have friends and family I can talk to, and I am looking into local support groups, but there has been so much work to do that there isn't always much time and when there is, I often don't have much energy. I have gained weight and lost sleep and feel generally not great. I am an only child, as is my mother. Her parents are both gone. My parents divorced when I was young and my father died over 15 years ago. My husband is VERY supportive and I have great friends as well; I am lucky and I know it.
I think that's quite enough. I am sorry I have written so much, but it's a relief. I know there are people here who understand. For anyone who's managed to get through all that, I thank you sincerely.
Hello Amy . Welcome to TP though I am sorry of your need to find us.
I am glad you have decided to dip your toe in the water and post on here.
We have members from all over the world on here
It is so very hard isn't it, you know your mum is being well cared for but all she is begging , pleading and making accusations, is to get back home where her situation would become worse, though your mum probably is unable to understand this.
It is quite common for someone with dementia to want go home , this can happen when they are in their home of 50 years.
Then that awful guilt monster starts visiting , sitting on your shoulder whispering away.
Many of us put the blame on others ,
ie The Doctor say's you need to stay here for a while to build up your strength.
The house is having some work done ( insert your choice of refurbishment) and you cant move back till its finished.
It is often very hard for us to tell love lies like this , me included . but it may help to take some of the pressure off of you.
We have an old thread on here about compassionate communication which you may find helpful, I say may, because it is not easy to follow, and it doesn't always work . but it should give you some ideas
back in a mo with the link.
Hi Amy, welcome to TP
There are quite a few "yanks" on here a and probably a lot more like me born in the UK with an American parent (my late mother or should I say Mom).
There as you say a of lot of differences between the UK and the USA, the National Hearth Services (NHS) was started in 1948 so we probably talk about a lot of things that have no USA equivalent and may well never for you as the chances of Obamacare ever really happening seem slight. Ultimately though it really doesn't matter where you are living dealing with Alzheimer's and dementia probably throws up many of the same problems, it truly a World Citizen in the disease world.
There as I said quite a few Americans on here so you never know what may be available until you ask. Don't be a stranger
I see I accidentally posted this on someone else's thread, which I'm sure is a breach of etiquette. Just goes to show you how distracted this can all make someone as I was SURE I was posting on the general introduction thread. Thanks for the warm welcome, lin and Kevin. I was really very nervous about posting here, although I've been reading for a couple of weeks.
Welcome Amy. You will find many understanding friends here and a place to share your worries and feelings. I was so grateful to find others who understand and dont judge me when i am struggling. Most days i feel like the worse daughter in the world. Then i remember i am still caring while everyone else has bailed out. That must be worth something?
Keep posting. You have soulmates here. Love quilty