Hi Everyone, I wanted to give an update to my mother in law after her admission into a home. Well, seems to be the best thing we ever did. This morining I had a meeting witth the doctor to review her meds, he asked what she had and before I could finish the word Corticobasal he blurted out "ya CBD it's obvious" I almost leaped across her bed and hugged him. FINALLY someone who knows CBD and is fully aware of the condition and it's side effects. He immediately reviewed her meds, changed up a few things and told me that the doctors know the disease but not always how to treat the mental part of it. Now, we have the finest team of specialists in Canada BUT this guy put my mind at lease completely....WOW
On to Laura my mother in law, I walked into the breakfast area and she was calmly eating breakfast, no complaints or fits of anxiety. She calmly told me she had to go to the bathroom, AND WAITED hald an hour until the nurses finished tending the other residents. She then told me 'those people need help more than me'...I thought I would fall over. You see usually, my mother in law expects to be tended to the second she asks for help, in the past 3 days she is realizing that there are poeple there that need help more than her.
She took a nap and was snoring away for about an hour, this never happened before. She woke up alert and ready for her morning stroll with her carer. I kissed her goodbye and off I went.
She is not registered for physio, arts and crafts and weekly communion. I had anxiety myself when we placed her, but know I am realizing that this was the best decission.
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Thanks for your post. I am sat here, in one of my moments of, "I can't go on any longer" a glass of wine in hand, wanting life to be over.
I know I won't get a "WOW" moment at the home, I hope S will go into, well it's the one he has respite at regularly, so it makes sense. They know PSP through S and a previous patient. But yes, your post gave me some comfort that life will be better for him there. At least they will have the patience to deal with the not eating, constantly needing the toilet but can't go. Well they won't care like I do. I know if he doesn't eat he will die, so do they, but it won't end their life, as S going, will end mine.
Really glad Laura is settling in so well. Long may it last.
Do you have children? Remember when they were young and would be disobedient with you but with strangers they were angels???? That is exactly what happened here, my mother in law knew what she could get away with when we are around maybe S will realize that. I hope so at least. As carers, we all take on the role to help our loved ones, but we are not mentally or physically prepared to do so. We are too attached and our emotions get the best of us, people working at homes are trained to do just that care for the sick and frail. I was once told by a doctor that thye cannot get emotionally attached to their patients, then it becomes personal and the care can be compromised.
As for the care, no one will care as much as we do, BUT the people working in the homes (the good ones) tend to the sick and elderly all day and kow how to deal with them as well. In my mother in laws case, at home she would get up every half hour or so at night to go to the bathroom then go to the couch and watch tv, here if she is up and will not go back to bed, they put her in her chair and bring her to the nurses station until she is sleepy. My first thought was, how cruel all she wants to do it lay down because she cant sleep, but after talking to them I understood that her behavior is learned and she has to re-learn. Low and behold, after 1 night, she got it.
I dont know what tomorrow will bring, she is sleeping much more during the day now, maybe we are entering the next dreaded phase, maybe she is catching up on some much needed sleep..who knows, but for today I am happy because she is good...
Heady, please dont want life to be over. Life is beautiful, when we see it for what it is, a short period of time that we live, laugh and love. I am sure you and S have had many beautiful times together.
We were given this life as a gift, and as such, we should look at the beautiful things we have, looking at a beautiful flower in bloom, then knowing that bloom will not last forever we appreciate that flower for as long as we can...S is so very lucky to have you and you are lucky to have him.
I hope you have friends and family that love you both, now is the time that you call on them for support, if not physical, emotional.
You are a fantastic person, please do not under estimate your strength, you have been through so very much and always looked forward, keep on looking forward never look back
Thank you Paola, yes I have got two children and S is exactly like them, if I am not around, does as he is told, sits and waits to be attended to. Until their back is turned of course, then up and walking around, well, trying to and normally ends up at A & E!
I understand all your comments, would have sent the same reply, if someone else had said the same as me. I am trying to look forward, but don't like the view. S in a home, me living in No Mans Land, until he dies. Which could be tomorrow, or two years time.
Sorry, having a bad, bad evening. Nothing out of the norm as happened, except I was feeling not bad this afternoon, been to therapy this morning, which I thought really helped. Show how much I know!!!
Hugs, Heady. I am sorry you are down. I'm back on the St. John's Wort myself. Only three weeks until the days start getting longer again, and that will help! Hang on. Love, ec
EC, thanks for that wonderful thought. We always use to celebrate the winter solstice, although, normally we would be in the Southern Hemisphere, enjoying their summer one. I really can't abide these dark, dark nights. Still another week or so, I can put the Christmas trees up, by the time they come down, the nights will already show signs of shortening.
Folks here start putting up their lights the weekend of Thanksgiving, that is, the end of November. I thought it was too early until I had been this far north a few years and started minding the dark. It helps!
Yes, I might put a few fairy lights up in a couple of days. At least the ones I put up outside, although today I can barely see the bottom of the garden, thick fog and everywhere is white with a thick frost. Pond's been frozen for a couple of days. This is already twice as much as we had for the whole of last winter. Depressed or what????.?.?
Thinking of you Heady.Much the same at my end.I was losing the will the other day.Toilet trips with no success are endless and so hard,in and out the wheelchair,then its peg feed time then catheter bag needs emptying!Went to the loo finally myself the other morning then had a nose bleed on loo ha ha.This morning ive walked into the apple tree and poked a twig in my eye!Also this week the spaniel has ripped her cruciate ligament had the op monday,so i have another invalid to care for!Remember you are doing so well thats what my friend tells me,but i know exactly what you been stress and tension take over cos we are so tired.D in respite on 13 Dec for a week so i have many things planned.Take care xxx
Thanks Millywigg, I too, have S in respite for the week, from the 12th. Not much planned, except get ready to receive 5 visitors. S's daughter and family are flying in from the States and will be staying with us for a couple of days. Oh and a night out to celebrate my birthday! That's if I last that long. The trauma of S's bowels, is eating into all my time off. Seem to spend all day in the toilet telling him to push. This just isn't sustainable much longer.
They don't bother with fancy things like that. It's the commode in the bedroom. i suppose it's easier, with having to have two people to transfer him. But yes, they do stay with him.
No one can look forward and like what they seem especially all of us. You can have all the bad days you want, they are well deserved. We are all here for you
That is WONDERFUL! I'm so very glad to hear it. Good news is rare and VERY welcome here, but because you were having such an awful time, I'm especially happy for you, your mother-in-law and the whole family.
To quote a term I recently used, JUBILATION!, JUBILATION! It is so good to hear that her anxiety was caused by a very real situation....moving! And once she realized that she was safe , she could also be happy and see the situation for what it really was....'those overworked people need more help than me! '
I do hope this sense of security continues for your mother in law...and for you .
Congratulations on something rare ....a bit of good news!
What a lovely feeling it must be to know she has settled so quickly and you can see she will be safe and well looked after and anxiety lowered for all of you.
That's great that things are going so well and she sees that others need assistance too. That's one of the hard things for them to understand. Being at home there is someone comes running as soon as they need something. Then in a care facility there are 2 people for 10-15 or sometimes 20 patients. I don't like the wait times sometimes, but if they are really working I understand, but if I look outside the room and they are just hanging out, that's not acceptable. Hope things continue to go well and she gets good quality care where she is. Thanks for the update.
That's wonderful news. I have a great team of specialists myself in London, On at University Hospital Part of my team is a neuropsychiatrist who better understands as you say the "mental" part of the disease. The rest of the team of neurologists know that is the area of expertise and leave the decisions around medication entirely up to him.
We were never referred to a neuropsychiatrist, my mother in law was diagnosed very late in the disease, her walking and speech were already severely compromised. I think she has had CBD for about 7 years, now she is totally unable to care for herself, cannot move her left side, walking, turning in bed, going to the bathroom, swallowing, writing and shiftig herself in a wheelchair are all things of the past. She is completely dependant on others for everything. in the past few days her anxiety has slightly diminished but she sleeps a lot during the day.
I am happy however that you have your team in London, great to have a fellow Canadian to talk to
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