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Discussion in 'I have a partner with dementia' started by Sad Staffs, Oct 22, 2018.
Thank you, x
Thank you for thinking about me @Manc70 , I really do appreciate it. I am getting stronger each day, but have yet to leave the house as it’s so miserable out there.
And @AliceA I'm so sorry to hear about your great granddaughter. There is something so wrong about a 7 year old having to go through that. I’m sending my best wishes to her, and to you Alice and your family at such a tough time.
Love B xx
Better safe than sorry, B. It has been very dull out but it hides the dust!
We had another look at a care home that offer day care facilities, we had coffee there and I realised just having support about eased me considerably. I am on alert at home and full alert when he is eating as he could choke.
The place looked like a hotel, I could have curled up on a bed!
Just too busy chasing transport possibilities to no avail. I have got the council involved because they axed the bus. By the time it is arranged we may have moved on a bit. Symptoms are so variable.
Yes, it is hard on our granddaughter and her lovely husband, this is the second child as the elder daughter had a rare blood cancer. She is in remission. The poor mite is getting an aversion to all things medical.
Thank you for your wishes.
Anyhow back to you, time will pass, you will soon be back together again. Build yourself up, indulge a little and spoil yourself. Xxx
I am still finding being in the house on my own very odd and unnerving! I’ve had a number of visitors, who always manage to call when I am upstairs and who keep ringing the bell as they don’t give me enough time to get down the stairs on crutches!
My husband has changed. When he first went into the care home he was quiet, didn’t socialise, and I don’t think he was any trouble to anyone.
I don’t know whether he has changed because he knows we are counting down until he comes home on Monday. Or whether his is asserting his authority, because he is certainly more feisty with me. Or is there an element of me leaving him in the care home? I don’t know....
He still isn’t socialising, although he continues to take his meals with the other residents. He sits opposite a sweet little old lady, his words not mine! He tells me he encourages her to eat her food, and explains her aspirin and that it will make her better, also his words. Other than meal times he spends the rest of his time in his room watching tv and waiting for care staff to look after him.
I have to admit that I quite like the peace and quiet in the house. To not have that face to face aggression has been very welcome. To only have myself to consider has been refreshing.
I know that next week it is back to reality. I know that I will be so happy to see him. Will I cope? Yes, as I don’t have any other choice at this moment in time. And, I still have 4 days to build up my energy, and while there is still relative peace and quiet.
I wish I had a crystal ball to tell me what the future holds, because I’m frightened of our future. I don’t know what it holds. All I do know is that our life is unlikely to get any better, it’s unlikely to stay the same, and that is what frightens me.... that life can only get harder.
I’m not exactly a bundle of fun tonight!!
But thank you so much to everyone who has thought about me and sent good wishes.
Love B xx
Im glad you are recovering, although i know that there is a way to go yet.
Your husband is OK. Dont worry too much about the future - you know that he is OK in the home and, when it gets to it, he would be OK there permanently. You know this, but we none of us want to think about that time.
Oh my goodness Alice, for your granddaughter and her husband to have both daughters have such traumatic health conditions. I really cannot begin to imagine how hard that has been for them and for the whole family. I don’t know what else to say. Except know that I’m thinking about you.
The care home sounds very good. It certainly sounds as if it has a higher star rating than the one my husband is in! I understand what you mean about having people around that know what they are doing, it makes life easier. I really hope this works out for you. You are having such a tough time trying to sort transport... I’ll keep my fingers crossed for you. Some things are just so tough to sort and often beaurocracy makes everything worse.
Take care of yourself, love B xx
Always the very welcome words of wisdom. Everything you say is spot on...
Thank you, love B xx
Hugs to you B. Try to enjoy the peace and quiet while you can. Everything will be back to normal soon, so look after yourself and don't be trying to run about to fast on those crutches xx
Hi @Sad Staffs
Just thought I’d pop in and see how you’re doing, glad your op went well, try to get as much rest before your OH comes home, I understand you’re missing him. Try not to dwell too much on the future( hope I can follow my own advice) you can only take it a day at a time, your immediate future will be hard until you have healed. Wgat am I saying it will not get easier but it’s a gradual decline/acceptance/learning experience whatever you want to call it!! My OH spent a night in hospital it was very strange coming home to empty house. Next week he is due to go in for his first respite care, I’m dreading it but also desperately need the break, really bad couple of weeks which I wont go into. You take care love S xx
I’m not sure about back to normal, I don’t think normal comes into any of our lives. Just thought about that, and that makes our lives abnormal.
Oh well..... I’m going to have to think this one through.
Adding insult to injuries, I have blisters on the palm of my hand from using crutches.
Now, that really is taking the mickey .
Hope you are ok @GinnyJan .... love B xx
Lovely to hear from you S. I’m doing ok thank you.
I try not to think about the future, I can’t convince myself what future there is. I get most upset when I think how quickly our lives have come to this. I shut my eyes and I see this strong proud man walking round a cruise ship, and I look at him now and he looks so frail and fragile. Hurts me a lot. Not that I need him to take me on holiday. I know that is unlikely to happen again. But it’s like we are different people, a different couple. We have both gone downhill so quickly, but in different ways.
I hope respite works well for you both. I don’t know what issues your OH has, but one thing that worked really well for my husband was that I wrote down brief notes for the care staff as to how I managed his day. My husband is urinary incontinent, so fitting his pads, which he can’t do himself, was the key to him being less agitated. So I spelt out everything, and the staff have mostly followed my way of working. I gave him a copy of the notes so that he could follow the routine. If they are late changing his pad, then he presses the buzzer.
I’m really pleased I did it. It has worked well, and gave us both peace of mind.
I’m sorry you have had a bad couple of weeks. Are things getting any better? I do hope so. And, do you have plans for your respite? Again, I do hope so, and that you manage to give yourself rest and relaxation, or lots of fun... just enjoy it.
Love B xx
B, you are so so lovely. This is a beautiful post, sweetheart. Helpful and loving. I so hope you are healing well. I know what you mean about the future. Writing those notes down and the staff using them was really good. Of course your beloved husbands frailty upsets you. I know and you know I know. This is a tough path sweetheart, thank God for people like you. with all love, Geraldinexxx
Great minds Geraldine, I was writing to you on your thread as you posted this.
So thank you for your lovely kind words. You always make me feel warm and toasty..... with much love to you, Barbara xx
Hi B, I know what you mean about not thinking about the future. Thank you so much for your tips going into respite. I have arranged a few get togethers with friends and at least it will give me chance to do a little Christmas shopping. But I really need to catch up on sleep! We have just got a care package in place so hopefully things should improve but OH has lost the ability to walk this last week so my “job” has suddenly become even more demanding. Wishing you the best for continued improvement after your op, not many days to go before your OH returns. Love Shirley xx
@Carary...blessed are the practical amongst us looking for solutions and sharing those sometimes obvious but in the moment overlooked solutions.
Sometimes when things are so topsy turvy I forget simple solutions, my mind gets overhelmed and shuts down.
Thank heavens we are not all in the same place on the same day...and someone can come in with a simple solution. Sad Staffs... A Thermos...when the visitors come have them fill it up and place it with all your requirements near your favorite chair and foot stool. Canary is on to a good thought here.
Good luck Sad Staffs hope things get easier as you adjust to these limitations.
3 days, 3 nights to go!
Where do I start....
the person I took into the care home and the person over the last couple of days and this morning....
I think they have swapped my husband for someone else.
Or did I take in someone else and now my real husband is back?
It’s so confusing.
Last week when I talked to him, he was kind, thoughtful, caring, loving and worrying about ME!
He has now become angry, aggressive, self obsessed, and if he doesn’t like what I say, then he says will you shut up, will you let me speak, but often there is a silence, or he puts the phone down.
He was accepting of the situation in the beginning. Having different people dealing with his incontinence aids just happened, no argument, no problems. Now, I think he must be being difficult with them. When they turn up if it’s not the right time to suit him he sends them away. Then he has to buzz them to come back!
And he is demanding to know who is fitting his night pad, the most complicated one. He writes it down. And if that person doesn’t turn up and someone else comes to do it.... well, I don’t know what he is saying or doing but he is certainly angry with me over it!
It doesn’t bode well for Monday. I thought I would be desperate to see him. I was last week, but he is being so difficult I don’t know anymore.
What I do know is that he will be home Monday, I will still be on crutches, I don’t think he was born with any patience! I struggle with his self obsession, and that is what has become so obvious these past few days.
I have no choice but to get on with it.
I’m almost always a misery when I write on here.... sorry
But, thank you for always being there... such welcome comfort.
Love B xx
Having read a lot of these threads I am realising all these feelings I have are shared by so many,fear, frustration, loneliness the shouting to defend oneself as my OH has lost control ,trying to run the home on my own and make all of the decisions necessary ,the stress and strain and it never ends, like pushing the tide back with a broom. Sometimes we love our OH and sometimes we don't ,but we never forget who they were and we struggle on and on with no end in site and in the end what us there left?????, is there anything left of us? This is truly the cruellest illness for victim and carer.
Hi B, not sure what to say as I have no experience of this yet. However do you think you will be able to manage if he comes home on Monday, I’m not asking what you want but what you need. Sorry if that’s seems a bit harsh it is said with much love and thoughts. I hit crisis point just over a week ago and with all the determination I have had to do everything myself I had to accept it’s not possible, hence his first respite next week. We had a nasty fall on Saturday and if my son hadn’t been here at the time it could have been much worse. I’m worried about you still being on crutches and trying to look after him, although it may be when he sees you on crutches his caring side will kick in, who knows what goes on in their confused minds. I know you miss him I was terrible the other day when my OH was in hospital just for 24 hrs and I couldn’t settle, so I understand you wanting him home. Would a few extra days help. Thinking of you lots of love Shirley xxx ps you’re not alone with feeling miserable that’s what we’re all here for xxxx
Oh dear, I really feel for you and wish there was something to be done. I understand you counting the days. Perhaps when he returns some normality will be restored. I do hope you have help as you are on crutches ,that alone has its own problems. Try to make the most of the next few days and if possible do something nice for yourself. Thinking of you. XXXX