A steady decline

I haven't visited the Nursing Home for two weeks now and the last time I did, Mother-in-law and I sat outside in the garden making the most of the evening sun and having a little chat. She was not 'with me' all of the time and was definitely a little slow in comprehending even the simplest of sentences, but we were able to understand each other ok. It was nice to sit and hold her hand and feel close.

Last night, however,was completely different, she sat staring into space and occassionally looking across and staring right through me as though she didn't recognise me or even see me and continually swinging her foot as was her wont when she was concentrating, in the past. For the first 30 minutes we sat holding hands and she kept squeezing my thumb but she had no idea at all who was sat with her. To start off with I was upset and found it difficult to look straight at her because I didn't want her to see my watery eyes. I did though turn to direct eye contact after a while when I decided that I would just sit and talk, so, I talked about anything and everything. Poor woman, I probably bored her rigid!

After a while she started copying my facial expressions; I tried smiling, wrinkling my nose, pulling faces and she did all of that. Finally after I had taken a 'Help me , mum' phone call from my daughter I related the culinary emergency to Mother in Law and she finally started talking quietly in response and as though she had had to think long and hard about the words that she wanted to use. At one point she even made kissing motions and when I misread this and asked her what she had said she did it again. Finally we were engaging in an exchange but on the point of leaving she reverted to the stance of a catatonic woman staring into space.

I wonder if these visits and exchanges actually register in her mind or if they are futile attempts at holding onto what she once was.............who knows

Living in a Care Home

Its a while since I posted here but it does not mean I have given up. Mother in law is still with us in Haresbrok, Tenbury Wells, and has slowly lost much of her ability to recognise her family and remember much of anything.
Sometimes she has a moments of lucidity but they pass quickly and on occassions she sits in a virtually catatonic state, swinging her feet.
Whereas I used to visit her weekly I now cannot bring myself to go to the Home for no other reason than it upsets me. Selfish? No, I don't think so. It is better for me to provide family support with strength than as a sad person.
One of the nurses in charge told me that by bringing in her favourite brands of shampoo, shower gel etc that I was trying to keep her in the here and now for my own sake and that it would be much better to let her slip into her own little world; this I know is against all dementia training but I do not have the personal strength to fight the system on this one. It took too long to ensure that her clothes were in her drawers and not on somebody else's back; this one I fear would be a never ending debate with the staff.
We keep sending her favourite brands and her own clothes and for me at the moment its all I can do as well as being here for support after visiting.

Visiting the Nursing Home

Last night I went to the Nursing Home for the second time since taking Mother In Law in there 10 days ago.
She is now more confused than I have ever seen her. She thinks she is working again, but its an easy job and there are vacancies if we wanted to work there as well.
From time to time during the visit she flashed back to present day and had short conversations with us, but for the majority of time she was in another place.
When we arrived, we were pleasantly surprised that she recognised me, kissed me and said how pleased she was to see me. At one point she introduced me to one of the other ladies and the look of joyon her face as she remembered 'Daughter-In-Law' was fantastic to see, but, last night these flashes were few and far between.
On the way back I said that I could cope with her being ill at home; mind wandering, having 'seizures' and having to deal with the emergency services etc, I could cope with taking her to hospital and never being sure of the outcome from her stay and on a couple of times I agreed, for hubbies sake, to try looking after her at home again BUT as yet I cannot deal with these visits to the Home.
I know in my heart of hearts that she is getting better round the clock care than she could possibly get at home but seeing her there in such a state of confusion and insecurity is a strange emotion.
I'm hoping that she will become more settled so that hubby and I can visit independently rather than together and give her more qualiaty visits but as yet hubby cannot go on his own and watch her declining. He has been told by his brother not to get tied into going too often but for someone who was with her 3 or 4 times a day this is a difficult habit to break.
I think she feels this is not quite right because she cried again when we left but at least this time I was able to take her into the Lounge to be with others before we left.
I wonder how other people manage to 'box' their visits and walk out smiling? It will be interesting to hear about your coping strategies if you feel like sharing them.

Final Journey

Today we had to make our decision on a Nursing Home. This duly done we were told we had the option of taking her ourselves or having an ambulance take her on this journey from hospital to Nursing Home.

Great chance to take photographs and clothing in ready for her arrival, we thought.

I nipped into Town and bought her some new slippers and dressing gown ready for the journey and then went to the hospital for the afternoon visit.

On arrival I was collared by Staff Nurse and invited into the office. At this point I was told that she was ready to be taken on the journey to the Home. On asking and relating my conversation with the Social Worker I was told it had to be now as she was too much of a risk to be kept in the hospital any longer due to her wandering.

Frantic telephone conversation with hubby and I am despatched to the chemist to collect medication and return to the hospital to find a lady who is very much with it today. I told her we were going for a drive. Where to? Where are the boys? It had better be quick if I am going home.

Upon getting in the car she wanted to know why we were going through Town. Oh just for a drive say I.

Finally we arrive. What is this place? We haven't got time to go here. We need to get home.

I suggest we have a look around. No, there's too much walking. I want to go home. I'm not having tea here. I'm not staying. Come on lets go.

We unpack her few cothes and walk to the dining room where I hand her over to the staff and make an exit.

However, whilst I am signing the necessary paperwork she is looking through the window in the door and calling my name.

I cannot help myself from crying whilst I do this and head for the car. I cry all the way home and for most of the evening: accompanied by a bottle of wine and numerous cigarettes.

This has to be the most harrowing experience of my life, on a par with the sudden death of my father.

This woman has been betrayed by me when she has given me her trust. How do I feel? I'll let you guess.

A new experience.

We're back in hospital awaiting a hopeful transition to a Nursing Home, I took her back in on weds (5/1/11) on the request of the Dr. When I arrived to collect her she didn't look well and at one point in the car I thought she had left us. She had been staggering and listing to one side as we got ready to leave and was giving me a reason for concern. After sitting with her for an hour I rang daughters partner and insisted that he got her to visit in case it was the last time of seeing her, the same with hubby. I wanted them to have no recriminations afterwards. They both found it a harrowing experience. The following day she was up and about again! Even the nursing staff felt the same as me, which was in a way comforting.
True to the relationship I have with her and had with FIL I would not lie to her and had told her where we were going; she was happy with this and understood what I was saying.
In the few days that she has been in we have noticed a serious decline in her physically and mentally.
Yesterday was quite traumatic as a 30 minute visit turned into 1 1/2 hrs with most of it being me trying to get away and her holding my hand and insisiting that she was coming home with me. Making comments like 'I came here with you and now I'm coming home with you' 'I wouldn't have come if I'd known you weren't taking me back' 'You can take me home and then come back again' 'I need to get home to do grandads tea' 'A will be upset if you don't take me home'
All the time this was going on she was holding my hand tightly and was determined not to let me go; perhaps it was her way of trying to hold on to reality and not slip back into the muddled state that she spends most of her time in.
When I finally got away I heard her saying 'She's gone now and I'll never see her again'
So heart wrenching and I admit that by the time I got to the car there were a few tears. But, sorry, that is me, I wear my feelings on my sleeve.
At one point I even had thoughts about stopping working and looking after her for the duration but then common sense took over and I realised that it would only be salving a conscience and would save others any worry and would not be what is best for her.
Now though, I worry about visiting again, in case this happens on another visit

I know this is just another phase of the illness but how on earth do 'caring' people cope with all these emotions? Sometimes I wish I was hard and could switch off after visiting. I appreciate that this is life and others have done and will continue to go through this, but , I have found that it helps to unburden the brain to write about it.

When did it all start?

Pin pointing the exact start is difficult. Initially she could hear my friend talking outside; then I joined in the conversation; and these conversations were happening regularly.
We moved on to hearing the choir outside before they turned into Carol Singers in the summer; but, if I told her she was talking about her dreams, she seemed to be satisfied.
One cold morning, when my husband went to see if she was up and to have his usual cup of tea with her before going to work, she was stood outside, waiting for the bus to take her and a crowd of people out for the day. This is when it started to be more serious as we were at the point of not knowing if she had had visitors/callers or not.
Brother in Law confronted my husband one day about us moving away from the area, after a conversation with her, but, she had spoken to us a few times about him moving away. Husband also has a girlfriend and a baby, apparently, but I think this is just her thinking about the past and it seeming very real and in the here and now in her thought process.
When you sit down and think about the things she is saying, you can relate them to actual events in the past and it seems logical for her to be putting her thoughts into order, but then other things are so incredulous that you have to sit and laugh about them, otherwise they would be upsetting.
A call to action came a few weeks back when the Carer found her fallen over in the snow. She had gone to help someone in the orchard who was shouting for help, and had fallen over and was unable to get up as the snow was very slippery. This event was very clear in her mind as not only did she tell the carer, myself, the paramedics and ambulance staff but also the Dr when he arrived sometime later.
Since then she has gotten progressively worse and very quickly and the tests were done to formally diagnose dementia.

Thoughts

Previously we have had confusion linked to a UTI and that can range from mild confusion to a quite aggressive response.
One day she walked down the connecting orchard (looking like she was on a mission) when she arrived she got quite upset to think that hubby and I might have been arguing. On this occassion, we weren't, but after having a cup of tea she settled and I walked her home again; and up to the Dr very smartly the next day!
Today she thinks about the pub she went to last night where the youths were fighting. She was given a safe room and came home early this morning. Very vivid in her mind but accounts for why the nursing staff saw her getting dressed early this morning; she was on her way home.
The other big change that I notice is that she has never been an emotional or tactile person; now, she sits and holds my hand and says to me very regularly 'You know I love you, don't you?' This is probably the one that can reduce me to tears before I have chance to blink or even think about it.
As the seemingly 'hard' one in the family this is quite disturbing; but dementia is not something that I have had to deal with before and learning how to respond to these outbursts of confusion.
Seeing people, who should know better, treat her with disrespect, is very upsetting. Taking the time to listen and find out a little more about her condition is important to be able to monitor her health and to have an adult discussion with her Dr. Looking, listening and learning have proved to be the key so far, and this is something that I can continue doing for her benefit. All of a sudden I find myself needing to become well versed in dementia, in order to be able to understand how she is thinking.
When we sit and talk I find that touching her head or her face or talking quietly in her 'space' causes her to respond with a smile and a conspiratorial look and is rewarding to think that she feels special on these occassions.