Hi all, taking time out to catch up with you all. My son has told me he wants a proper Christmas lunch/supper (35 going on 10) so I am preparing veggies, gravy and roasting a chuck (not turkey as only 2 of us). It is something I did not want to do but it is strangely relaxing there is no time schedule as at other Christmases as son has said we will do the cooking after seeing M at the nursing home.
M is not doing well third week of fighting for breath against a chest infection that is unresponsive to antibiotics. They have started a palliative care pathway hyocene and sedatives via her syringe driver to try and relax her and give her some rest or at least reduce her near constant crying when not choking. She spends a lot of time unresponsive to questions choking and crying but then has a few hours of lucidity and smiles and tries to remove her tubes with a giggle.
The nursing home staff are very good and let me stay with her most of the day and evening but I am drained she recognises people but the choking spasms are tiring her out and causing her to lose even more weight.
She is scared but does not want to give up life to PSP but it is starting to win, her final battle is near but she is not going easy.
I pray for strength to support her and for her to come back to me for a few times more.
For those who can have an enjoyable Christmas Day for those in similar situations to me - hugs and prays. Tim
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Sending you a big hug Tim with a prayer that V remains calm and peaceful until she decides she has had enough. As you have prepared the meal, get your son to clear away, wash up/fill the dishwasher and sit and relax a while.
My son and daughter in law have had to go and check someone into their inn so I am on Nanna B duty whilst preparing veg but I don't mind as I have been waited on since I arrived on Wednesday.
Thinking of you today especially and hoping V has a comfortable day.
Hi brownmdj M was diagnosed 4.5 yr ago, but optician spotted irregularities with eye motion about 6 yr ago and she had been having difficulty dancing for a couple of years prior. Her decline was slow initially but as more functions lost the quicker the decline.
sounds like M- I was diagnosed in 2016 but had symptoms in 2015. So just starting on my path with PSP. Will enjoy the moment. Although I don't have physical symptoms my executive functions are bad.
Tim I am so sorry Margaret is not responding to the antibiotics. At the same time I know you don't want her to suffer? She sounds so lovely and I am sorry we didn't get a chance to meet.
Can I borrow your son?☺. He sounds just great. My own is not bad, just not here a lot but kind when he is. He doesn't understand though and can't be around his Dad for long as he gets upset. My daughter on the other hand is very good with him but seldom has the time to visit him.
Grandchildren are the opposite. Our Granddaughter who he has always loved to pieces sits there looking so worried. She is only 13 and has never had anyone in the family die. Grandson on the other hand with the innocence of a 7 year old just takes it all in his stride. He misses Grandad not being part of his daily life though.
Yesterday just out of the blue he asked me had I enjoyed Christmas while his Mum was driving me home. He was actually the only one who asked me that. It choked me up to be honest but I told him I had and what a beautiful singer he was. He had been singing Silent Night.
Today I haven't seen or heard from anyone. The loniless is overwhelming at times. I can only see my husband if someone can take me as I don't drive. Neither of them contact me in case I might want something doing. Although in fairness my son is taking me to see my husband tomorrow with his daughter. He won't stay more than a few minutes though.
My husband had a good day yesterday while we were there opening our presents with him. He looked like he was genuinely happy thank goodness. I am going to see him tomorrow. So just have to get through today. Goodness knows how I will cope when he is not with us anymore. I haven't stopped crying for days. Apart from during the day yesterday. I miss him more than I ever thought possible.
Like Margaret he coughs and chokes a lot. When he sees me he starts to cry and when I go he cries and in between he cries too. I want so badly to make him smile but it only happens occasionally.
I will say a prayer for you and Margaret. Hopefully she won't suffer Tim and hopefully you will get back those few times you want. She sounds like such a lovely person even she is suffering. You love her so much and although she has this awful PSP she has been lucky to have you by her side.
Marie, my heart goes out to you. You are going through an awful time, and I'm sorry you are so isolated. Your grandchildren sound lovely. Sending you a hug, and hopes for better days, love and peace, ec
Life is not easy for any of us? The problem with my children who are actually adults is they have no understanding of this. My daughter has snapped my head off a couple of times and told me that this is happening to Dad not to me! That says it all really? My son understands much more but is broken hearted and struggles to cope with it. It's all so sad. I always thought they would be there to support me. My son does as much as he can. My daughter never even rings me!
I hope this doesn't come back to haunt her one day.
Thank you Marie. I hope your husband settles and continues to recognise you and begins to smile when he sees you. I have been coming home to an empty house for over 8 months now, it is one of the reasons I visit M daily.
I can drive but there is a good bus service to Rhyl and an easy walk to the home. In summer I used to walk the 4 miles along the river and coast but only if sunny and still. I know she likes me to see her because of her smile but if I am late or miss a visit the nurses tell me she is disturbed (more guilt heaped on me).
The empty house is so quiet no longer comfortable and cosy as it was, as Margaret is no longer here, I have pictures and digital photo displays but they are not the same. I am in limbo no longer looking after her but equally not able to move on, suspended bereavement. Another bitter pill from PSP for the carer.
I hope your quiet day has passed and you are having the family with you today. Tim
Tim my husband has twice this week thought I am our daughter! Don't know if I should be pleased or insulted! He is really becoming confused. He just lies there and has told me he doesn't bother them! Not sure if he was told off for ringing the bell so now doesn't bother. I worry that he won't ring it when he needs help.
My son offered to take me to see him today. I was there for 5 hours and apart from him telling me he loved me and asking for kisses he didn't talk much but I did get him to watch TV he had given up on it!
He was cold as they had put a summer short sleeved t-shirt on him! The blanket he had on was the kind he had in September! His legs felt cold and they never put his pyjama bottoms on anymore. So I am really worried about him. He is not getting care never mind Nursing Care. They are a Care Home so he will need to move if they ever give us CHC!
Like you I worry all the time when I am not with him and home no longer feels like home. Took moist of the photos down to make way for Xmas decorations but goodness knows why as nobody has been inside the house. Apart from my son. Oh and Granddaughter came in when they came to collect me. Maybe my Grandson will appreciate it when he sees it?
I haven't seen or heard from my daughter since Xmas Day. I will tomorrow morning however, as she needs a babysitter in the morning! I love my little Grandson so much so I am looking forward to him coming here. The first and probably the last time this month. In fact I may not see him for another month or so. She only lives around the corner and if I want to see him I just go because in his own words : " All Mum does is work, work, work"! She has to of course but I think she is forgetting she has a little son. He seems to go from one house to another poor little soul.
My Granddaughter who has always been close to me has not bothered to stay for 3 weeks now. I don't think she will come to stay this week either. She feels very uncomfortable visiting her Grandad too. She suddenly wants to spend time with her Mum all the time. Mum isn't the most maternal person, so I think it is about going places other than a Care Home or here where she is reminded of her Granddad.
So this has been the worst Xmas I have ever had. If my husband is still alive next Xmas I don't know how I will face another one. If not I am not going to stay here and go through this again. I just dread it. Now just have to get through New Year's Eve. My sister-in-law died on that night 3 years ago. Never did like New Year but that finished it off for me!
Tim you have been and still are a star. You look after your wife so well. The awful thing is going home to an empty home? Or does your son still live with you? It's all the thoughts you can't escape from though. Good and bad. Then we all have to go through it again?
I wish I could get to my husband everyday but it's just not possible. I feel guilty enough asking people for lifts all the time. One of my driver's won't be available until the 5th January so I keep telling myself it's not long! In the meantime I just have to keep my fingers crossed that I can get lifts from others. It's so stressful on top of everything else. I can never tell my husband I will see him on whatever day. That really upsets me.
So no family here again Tim but at least I did see my son and Granddaughter and got to visit my husband. Now have to think who I can get to take me shopping! Son usually does but he said he wasn't feeling well and didn't offer. Meanwhile I have no food!! Apart from chocolates!
Sorry Marie, my son is with me and M for Christmas but returns to his home today, as he says why be on his own in his house when he can get free food, heat and see his mum and dad. Lives about 2hr away, been a godsend for Christmas, he is trying to get leave from the hospital but difficult time of year.
I do not think I would have coped without seeing M most days, you are strong. Sorry your daughter is playing the ostrich ignoring your needs I hope she relents soon. Enjoy the chocolate.
Contact your GP and get CHC process moving readup on Kevin1's post on claiming go forearmed. Your husband needs nursing care now, the process needs to be underway before the care home have to decide they can no longer deal with his needs, and the social services place him.
You take care and I hope you get to see your man before the New Year. Tim
Dear Tim you are having a tough times and I really feel for you both. This disease certainly knows how to do its worst, in every way and the separation of the one you love and have cared for is do lonely and distressing.
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Christmas is difficult
