Hi Jolamine,

Thank you for your kind words. It was good to vent, and even better to get your reply. I am sorry to hear about your mom, and your husband. It is hard having a partner who you can no longer have conversations with. I can't imagine having my mom on palliative care, she has been my rock through all of this.

I have tried to bring in home nursing help but he has turned them all away. He is used to be being independent and cherishes his privacy. He has started turning away all of his friends as well, and has not allowed anyone to visit except my mother and his sister (who lives in another country). I have surreptitiously arranged a couple of surprise visits by his best friends just to keep him company, but I understand why he hates the pity and wants to avoid being seen in the state that he is in.

I now have a cleaning lady who stays at our home while I am at the office, and has instructions to call me if he should need anything. He does not let her assist him with showers nor changing clothes, but he will have to accept home help soon if we are to keep my income. I have been taking a lot of time off work, and it has not been good.

My daughters are 12 & 13. They have watched the progression of the disease over the last two years, though I have tried to shield them from the worst of it. My husband now seems a stranger to them, and they have been avoiding him. They still love him dearly, and they know he loves them by the gestures he makes. At this stage, they spend more weekends with friends or relatives than at home...better to avoid his mood swings. We are making an effort not to make these last months be the memories they keep of him. There are pictures all over our walls of him taking them canoeing, skiing, biking and even one of him carrying them as babies. But the healing cannot start just yet.

It has been great discovering this chatroom, even though I am not in the UK. This is the first chatroom I engage in, and just reading other people's stories and advice has been helpful. Maybe my experiences can help others going through this as well.

Just a guess, but are you in the US trillian? We complain like crazy about our NHS service, but if it wasn't for them I wouldn't be here now. I have had thousands of pounds spent on my treatment, and I can be nothing but grateful to the NHS. Even though I hate my local hospital. I am treated in Chelsea, pretty much Central London. Knowing the price / costs of everything, despite being insured, must be an added nightmare.

Remember how lucky you are to have your two beautiful girls. I have three nieces and two more bumps, one on my sister and one on my sister-in-law. Wondering how they will grow up in this crazy crazy world makes me worry sometimes. Having them around is such a godsend because I was never lucky enough to have my own children. I'm sure you do, but cherish them, cherish them.

Do shout me if I can help, I'm only a click away.

Hi Trillian,

I am glad to hear that you felt a little better after you posted on the forum - it often helps just to write things down.

Your children are still at quite an impressionable stage - not quite adults but not babies either. It must be quite difficult to shield them from the worst whilst still involving them in their dad's demise. My mother-in-law is tone deaf and has dementia, which makes communication difficult, even for me, as a fully grown adult. I can understand how they have been avoiding him and prefer to spend time with relatives or friends instead. Has your husband noticed this too, or has he indicated on it in any way? To start with they will probably remember him as he is now, but, with the passage of time they will recall happier times with him. I am sure that you will do your best to ensure that this happens.

I hope that you have other family and friends who can support you at this difficult time. It must be so difficult to deal with his mood swings. I certainly find that it is with my hubby. Much and all as I love him dearly, there are times when he is like a stranger to me.

Do you think that seeing a counsellor might help you at all? It works well for some, whilst it's not so good for others. Having pictures all over the house is a good idea. I still tend to talk to a picture of my mum at times and find this a great comfort, even though she passed 20 years ago.

We have gone through the stages of turning away any form of help, because my in-laws have always been fiercely independent and value their privacy. My 97 year old father-in-law has been looking after his wife for many years, but has gone downhill himself in the past couple of years. He doesn't appreciate how much he has failed and we had to eventually get a social worker involved. She has been great. She spoke to my father-in-law on a Friday and had a hospital bed delivered on the Monday. By Monday night she had the first carers in and they have been coming in 4 times a day since then.

It is intrusive having strangers coming into your home so frequently, but my mother-in-law looks so much cleaner and more comfortable since this was implemented. They are coping with this intrusion by day, but he has refused to have someone sit wih her by night, so that he could get a few hours uninterrupted sleep. Your cleaning lady is a good compromise, but in time,  you may have to get more medical care in if you are to keep on working - it's never easy, is it?

We are the same with friends, but I try to keep in touch with some of their close friends to update them on how they are both doing.

I have found this chat room a real boon and, by reading some of the stories, realize how lucky I am, even though I have a lot of health issues to contend with. I have no doubt whatsoever that your experiences will be a help to others. I have become involved in replying to some of the posts on the site because, in my early days of diagnosis, I found such invaluable support here, that I wanted to give something back. I find that doing this helps to take my mind off my own troubles.

You may not live in the UK, but rest assured that we are always here for you, irrespective of where you live.

Kind regards,

Jolamine xx