My family is going through hell

[Bad Alice]

My mother is blind and has Alzheimer's disease.

Things deteriorated rapidly at the beginning of 2016, when she suddenly lost her vision due to giant cell artiritis. It was a huge change for us all (my sister and I), as my parents (in early 80s) were living a fairly normal, independent life up until then. My mum was in and out of hospital alot of that year. She developed steroid-induced psychosis and was admitted to a mental unit for several months. We hoped for some improvement to her vision but this was only very slight, she is able to see some movements and light and some random images only.

In the years leading up to this she had been developing short-term memory problems which concerned us, but she would not acknowledge these or agree to seeing a doctor about it. Now she has full-blown Alzheimers too. She still lives at home with my dad and we have had a live-in carer for some months. She still knows who we all are and we have a relationship, she is still often very sweet and funny and loving. However, she now has patches of very difficult behaviour most days which last for a few hours. It's almost like Jekyll and Hyde behaviour, she will turn nasty, agressive and shout at the top of her voice. Even the carer struggles to cope. She is almost aways sorry afterwards. My sister and I will often phone up and try to talk her but it doesn't always help. She will be convinced something is happening or she is somewhere else, to be honest she never really knows where she is now. We are on an awful emotional rollercoaster, that is what it is like. My dad is running himself into the ground and my sister and I are trying to cope with our jobs, partners, having a life whilst going over to see her as much as possible. It is incredible that she really has 4 people devoted to her (including the carer) and yet we are struggling to cope!

I am wondering if others are having to cope with this kind of behaviour and how they do? We sincerely want to keep my mum at home as long as we can, she had a difficult childhood, she didn't really have a family life, and she has been a lovely mother. She is such a fragile, frightened, sensitive person, and very emotional. She is also physically still strong, which makes the difficult patches more challenging. She is on anti-psychotic medication and also patches for the Alzheimer's. I know that many people out there must be struggling to keep their loved ones at home and understand what we are going through.

 

[Clueless2]

Welcome to TP, you have certainly found the right place to ask questions and receive sensible and considered advice from sadly all too experienced members.

Your description could have equally applied to how my mother was a couple of years ago, only my father was also fighting his own cancer battle too. My father chose to pass away in a hospice because my mothers difficult behaviour towards the live in carers (daily physical and verbal assaults) would have prevented him from having a peaceful last few weeks at home.

My mum was also fragile, frightened and sensitive; I remember struggling so much with trying to work out what was best for her with no previous experience of dementia to draw upon. It is hard when the parent who has been so loving, supportive and independent is now suddenly so utterly dependent and behaving so out of character.

The reality sadly is that if your father is also to survive this new "normal" you may well need to consider looking at care homes now. It was not a reality that I wanted to face at that stage either. But your dad will become completely worn down and probably unwell himself if the current situation continues for many months. As you wryly observe, 4 of your are struggling, and dementia only progresses, through different and just as challenging stages. There is no let up.

It was mums live in carers who gently nudged me towards the care home option. I had thought that she would be better in her own home, surrounded by her own familiar objects, 1-2-1 care, able to walk in her garden which she loved. I was certain that this private previously loving soul would hate the care home environment. However I was completely wrong. Mostly I think that she believes that she is in a hotel. She loves the stimulation of staff, residents, activities. It is as if her dementia does not allow her to see what we see.

Practically make sure that Power of Attorney is in place, Attendance Allowance being claimed and begin to visit care homes. Visit mid morning or afternoon, without an appointment; you will see what really happens, staffing levels, activity, cleanliness etc. It isn't about the décor, it is about space, lounges, quiet areas, plenty of seating, objects to stimulate (eg mums has a chest of draws / dressing table in a corridor with clothes, hair brushes, necklaces for residents to pick up, fold, put away, get out, take away with them....) organised activities. A quick chat with a residents relative on the way in or out can also be revealing.

Good luck, and keep picking up information on this forum, it truly is a lifeline.

 

[Soobee]

Is the medication being monitored? Has she seen the memory clinic? It sounds like you need more support and a review of her medication.

If you keep a note/diary of how often the mood swings occur that will help to show how much she is struggling at the moment.

 

[Bod]

Hi & Welcome.
You need to get her checked for a UTI (water infection) this will often affect sufferers badly. (wee sample to Dr's for infection checking)
Get her GP to do a full medication review, including any over the counter meds, and herbal meds. Include any under the counter drugs!
Start looking for Care Homes that can cope with both the blindness, and Alzheimer's.
You may not feel the need now, but sooner or later the best care for her will be in a Home.
Many, many of us have faced that decision, and know how hard it is. My father had to go in, once he settled, his life was much improved, gained weight, and smiled!

Bod

 

[Bad Alice]

Thanks all for your very wise and practical advice. I did feel a bit sheepish when I began to read more about some of the ordeals people have been through and the very similar challenges that people are dealing with. I realise that we do need to start preparing now for a move, however soon that may be, to a really great care home for my mum, we owe that to her. They may be able to do a better job than we can. It would be a task persuading my dad though, who is determined to look after her himself.

I think a step towards it may be a short period of respite first.

My mum did have a UTI last week, which made her delirious for a while, she has been on antibiotics for that and has improved since then. She does also have regular psych evaluations by the Local Older Adults Mental Health Care Team. Ironically she always behaves really well when they come round and I think they get the impression things are better than they really are. The live-in carers that we have had have supported the decision to care for her at home so far, although they obviously find it very difficult at times and have to put up with shouting and aggression. They often go off for long breaks though, and this does leave my parents without any support for periods of time. Usually this will coincide with mum have a difficult episode too! I know it must be very challenging for the carers, they need a break, and are entitled to two hours a day, which they will often save up for a long break over one day. It would seem that, ideally, more than one carer is needed in order to be able to take the pressure off and cover for the other one. The current care company we are using only provides one carer for a four week period with a week's break after that.

So glad I have found this resource (or more accurately was led to it by a good friend). I will keep checking back. Recently someone recommended a book called 'Contented Dementia'. Has anyone read that?