The Daughter in law's blog

Yesterday

2009-10-26T04:57:46Z

Yesterday was a busy day.

We all went to church in the morning and prayers were said for Sylvia during the service. We arrived back home had a quick lunch. About 2pm my sister in law arrived with her carers to go for a visit to see mum at the hospital. They were there for just under an hour and the sister in law behaved herself wonderfully which is quite a rare event as she has no concept of the volume of her voice or the appropriateness of her words. As they were leaving Sylvia thanked Hubby for bringing his sister for a visit and how wonderful it had been to see them both together. Hubby explained he would be back the next day as we had a birthday party to take the children to that evening.

The minister from Sylvia's church back home came to visit her at about 3.30 and stayed for 40 minutes. They read Psalm 23 and prayed together. They spoke of forgiveness and peace. He left her in a happy frame of mind and feeling particularly well.

At 5.30 the ward sister went to see Sylvia and she was sitting up in bed reading the news paper. She asked how she was and Sylvia replied that she felt quite good happy, comfortable and unusually energetic. No pain at all (although she had complained of some pain earlier in the day).

Sometime between 5.30 and 5.45 Sylvia folded and laid down her paper to take a rest. She passed away quietly.

We recieved a call from the hospital just as we were to leave for the childrens party excited boys coats and shoes on ready to go. Such a shock. We drove the children to the party and left them in the charge of a trusted friend and went on to the hospital to see sylvia. She looked so peaceful as if just asleep, the way she always looked when I took her her morning coffee each day. Hubby shed his first tears since all this started but was very strong and much relieved that she was at peace without anymore suffering.

We've,between us, called all those who needed to know immediately her sister (who agreed to tell much of her family the news), the minister, hubby's father and the care home where his sister lives.

Today will be a tough one. First we must tell the children what has happened and try to help them make sense of it. Then hubby will drive to Sister in law's home where he will break the news to her in person. It promises to be a very painful and tiring day. I've promised I'll handle all the formal legal stuff and he is glad of it. She was supposed to be signing her will today, the solicitor has an appointment to visit her at the hospital. I don't know how much of a difference this will make. So don't want to have to deal with it just want to stick with hubby and the children, all together in our home not letting all the outside in. Dispite that I'm bombarded with, must do this, must do that, got to call such and such. My mind is harranging me constantly and I can't make it stop. Woke at 3.30am already thinking of jobs that need doing before I even knew I was awake.

Thanks for being a place where I can get it all out. Can't lay it all on the Hubby his pain is greater than mine.

Been to visit today

2009-10-24T16:07:59Z

We went to see MIL today. Hubby has been seeing her everyday but I've been having to stay at home with the children. We took the boys to say goodbye. She is unable to hold a conversation and struggles even to finish a sentence. It would be unfair I think, at their age, to take them back when she is worse than she was today.

My sister in law's carers will be bringing her to say goodbye tomorrow. With her it would be likewise unfair to take her to visit once Sylvia has declined further. She has severe autism and bipolar disorder it's hard enough for her to make sense of it as it is.

It is so sad to see her this way and I can only hope that her prayers for quick release are answered.

Turn for the worse

2009-10-23T19:16:25Z

I took a call from the hospital today, not good. MIL condition has deteriorated significantly. The doctor told me that she believes time is now very short weeks or days rather than the hoped for months.

I had to tell my hubby when he got in from work and also had to tell her sister in scotland over the phone. Hard hard conversations.

Feeling strangely numb. Have made all the important calls and now we wait for tomorrow when we can take the children in to see her and make plans to bring up sister in law from the care home for a visit. Just focusing on planning and organising.

Hubby is remaining calm and collected, I really don't know how he manages it. Waiting for the floodgates to open.

It was only a short time ago that we thought she was coming home now it wont happen. If she stays stable over the weekend they will look to move her to hospice but it didn't sound as if the doctor was very hopeful even of that.

I think this is what she wants, she's been telling hubby she doesn't want to continue like this any longer. I think that once she decided that and stopped fighting this decline started. Feel sad and angry that this disease has come into our lives but can't bring myself to be sad that the end of the pain and indignity is in sight. Quite simply it's what she wants.

She'll be home soon.

2009-10-16T17:22:45Z

Occupational health have spoken to the hubby. MIL should be back sometime next week as long as we have all the additional aids in place for her. Stair lift has been requested for her along with commode and other items. Thanking God the house already has a wet room. Seems odd that it was the thing we thought was the one major downside to the house when we moved here last year now it feels like a saving grace. Confirms what MIL always says which is things happen for a reason. I figure God knew we'd need it soon enough.

Looking forward to getting her home as I'm sure it will improve her outlook. She has missed seeing the children these last two weeks. I'm relieved that she will be getting more support from now on, she should be getting someone to come and help for a few hours each day with bathing and such like. It's kind of a relief because although it will still be me most of the time I will definitly feel more supported in dealing with it.

She says she's had enough.

2009-10-15T09:29:44Z

Hi All.

Hubby went to visit the Mother in law in hospital yesterday evening. It was quite a tough visit for him. MIL was saying she's had enough. She's in pain, can't get to the commode in time even though it's right next to her bed. She's been telling him it's no way to live and she can't bear the loss of dignity.

I'm hoping that this is a phase that passes and that she can find something that gives her the optimisim to continue the fight. If she doesn't it may speed the process. The hospital environment isn't helping, she's not getting meds on time and she doesn't have the same stimulation as at home where there's always someone to talk to and children to watch play.

She is getting visitors each day, my hubby see's her for 2 hours each day, the Vicar see's her a couple of times a week but her friends are further away and unable to get here so often as they would like. Her best friend is quite elderly and finds it hard to get about much. I wonder if getting a few more visitors might help. I know from my own experience that hospitals are a very lonely place when you spend a lot of time there. There's little freedom with visiting hours and no privacy for heart to heart discussion. Perhaps we could go collect her best friend and bring him to her. Worth thinking about and discussing with her.

Torn between wanting her to continue fighting it and fully understanding the desire for the pain and indignity to come to an end. I don't know whether to wish for her to regain the strength for the fight or wish that the end now comes swiftly and peacefully.

Wont be helped

2009-10-13T15:39:30Z

Been to visit the mother in law today with the children. Was worrying and upsetting.

The problem is with her pain meds. she is supposed to get a dose at 1pm at 3pm it still hadn't been given. I said 'I'll go ask about it shall I?' ' No, no' she relies 'don't talk to any of the staff.'

I'm her primary carer and she refuses to let me talk to the medical staff at all. They wont talk to us without her permission and she wont let us talk to them at all. She has no quarms about complaining about them and how they treat her but refuses to voice her problems.

We had the same problem here. One day I overheard her bad mouthing me to the Macmillan nurse then she announced she wanted to go into residential care. When I insisted that she tell me why it turned out that she had wanted more help and support and for me to do more for her. that was not a problem as far as I was concerned. I had only been waiting for her to tell me what she wanted. Knowing her to be fiercly independant and with her having told me not to mollycoddle her I was waiting for her to say when she needed help. I was not expecting her to fly into the frightful rage about being unwanted and unloved because that is far from being the case. We managed to resolve the issue but only because I demanded that she talk openly with me.

I don't know how to proceed from here. I need to know certain things about her condition and treatment to stand a chance at keeping her happy and comfortable when she does come home and to know what problems to look out for. It's making my husband angry because he feels that she isn't letting him be of help to her and then gets cross with him for not helping enough. We really have our hands tied and I hate the way this is making hubby feel. It's leaving him feeling angry with his mum for not allowing him to know whats happening except the complaints which she wont allow him to address. Angry with the staff over their failure to get his mums pain meds to her on time and so so sad that she wont allow him to help.

I'm torn between anger and sympathy for the staff. Anger because they clearly aren't ensuring her pain is well managed and sympathy because she just isn't telling them everything they need to know and is probably really horrible to them as well.

I may sound unsympathetic towards my mother in law at the moment and I do know she is in an awful and very confusing situation. I can just see the pain she is causing hubby and the unnecessary pain she is going through because she insists on so much secrecy. She likes to think of herself as savvy and streetwise but I fear it is actually paranoia and fear. She seems to honestly believe that no one cares and that everyone wants her to just give up and die. That really isn't the case all we want is for her to be as happy and comfortable as she can be and to get as much quality time with hubby and the children as possible. We don't want her suffering and feeling resentful when there is no need. She should know all this, we've told her frequently but it seems to go in one ear and out the other.

This visit to the hospital far from reassuring me about her has left me with more fears and concerns over how things will be when she comes home again.

Talking to no one.

2009-10-12T09:56:33Z

Having a tough day. Mother in law still not home from hospital still very poorly. She wont let us bring the children in to see her so I've had to stay home with them so hubby can go visiting. Not seen her in over a week now but hubby who generally tends to understate things is starting to say he's worried, which means he's very very worried.

We had to go back to her house to sort out a few last items ready for the sale of the house no one to take the boys while we went so we took them with us. it was the first time they had seen Nanny's house emptied out. Ever since my eldest keeps talking to Nanny as if she was here at home. He says goodnight to her empty bed and called up to her room to say goodbye as we left for school this morning.

I just don't know what to do. How do I try to help him through this he's only 3 and a half. When he first started asking questions we decided not to lie but make things as simple as possible. Don't know if that was the right thing after all. He's clearly worrying.

This is where the worst begins... I think.

2009-10-10T10:28:23Z

My mother in law was diagnosed in August with Stage 4 Pancreatic cancer but has remained remarkably well since. She has had some swelling of her legs due to loss of Liver function and some bladder incontinance but has otherwise been able to do most things for herself.

Last Saturday she was admitted to hospital with a DVT and infection in the Gallbladder. She has struggled to regain the same vigour that she had before her admission. I haven't seen her myself as the children and I have been poorly and didn't want to risk exposing her to further infection but my husband has. Apparently she is more dependant now needing help getting to the toilet and with bathing. I desperatly want her home so I can see for myself how she is doing but I'm also terrified about how I will cope with her and the children now she is so much more dependant. I know we will get more support at home as her needs become more complex but it's still a worry.

My husband has started to talk about giving up work so that I can go back to the job I love ( He hates his job). I find that I really don't want too. I know how upsetting I would find it if either of my boys ended up having to provide intimate care for me and I don't want her to feel at all uncomfortable in these final months possibly weeks. I want them to be able to maintain a normal mother son relationship right to the end. What do I do? Should I be selfish and return to work and allow my husband to take up the reins or do I say "no, I'll do this, you concentrate on enjoying your time with your mum". I know that he will find it so much more distressing than I will, he's a sensitive soul. My relationship with the mother in law has been difficult at times and the stress of what she is going through is making her snipe at me more frequently. I don't want hubby on the receiving end of it in case it damages their relationship, he deserves to have only the fondest memories of his mum. Aaargg What do I do?