I am new here and have been struggling as i am separated from husband but live in same small house, he is showing alot of memory loss and confusion amongst other stuff. He has been referred to memory clinic 4 weeks ago. I have been very unwell myself with depression and ocd i am worrying how i am going to manage with everything especially my ocd and hygiene if he starts having acccidents. I run bath for him, cut hair, cooking cleaning, washing at moment. Is anyone else separated but trying best
Jackie
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Hi @Jackie66, welcome to the forum. Sorry to hear that you are having trouble. My best answer is speak to your doctor for help as he/she can refer you for counselling and medication to help. It might be worth having social services to help you with carers but depends on how your husband does on the test they might put him in a special memory unit where he would be safe than at risk. Who ever you speak to tell them your concerns.
Good luck.
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Do you own or rent your house? Would this be a good time for you to fully separate?
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Hello Michael, thankyou for your reply. I have spoken to gp all she says is try and go out as much as i can as its not good to be in situation all the time. I have been receiving councelling for over a year as i pay privately, i have needed to as been very low and we were in a car accident 2 years ago where he was driving and our car over turned. He started going downhill after that. He is accident prone trips over stuff but always been like that. I just dread future i do care but its just too much. I am 67 hes 79
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Hi yes we own our house, i feel like i should have left before this really, if we sell there wont be enough for me to buy a flat and im 67 now. I just dont know what to do if im honest. We have no one else family arent interested.
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@Jackie66……hi, so sorry that you’re going through all of this. You’re not alone, it’s important to share how you feel. The guys on this forum are a godsend and there is so much support here. I understand how you feel, my husband is 58 and I’m 55. He has severe mobility problems and has just spent the last 7 months in hospital and a care home having intensive physio to walk again after 2 major health scares last year where he nearly died. He came home 3 weeks ago and hasn’t helped himself to continue moving/look after himself. He’s just been moved back into a temp care home before he goes to a permanent one as he/we can’t manage at home.
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Hi Sue i hope this posts ok as im still trying to work out the website. Im sorry to hear what your also going through. After we had the car crash he said i wont let my body seize up i will get walking but he hasnt done anything and now just sits about, ive struggled too have needed physio, and therapy for other things and all this is really dragging me down then i feel guilty for feeling like it.
Im sad to see him deteriorate but im trying to cope with everything at moment until we get a diagnosis. I feel resentful at times as we are separated but we also have a lot of history which is why im still with him, 45 years is along time. I was goung to Devon only a few months back to see my friend and it was a break from being stuck indoors now my daughter who is also unwell says i cant leave him. Its all a mess sadly
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Hi Jackie, the post came through fine, it’s a bit hard to work out this website!
I can relate to a lot of what you’ve said. Phil is the same, he came home from the stay in the care home having undergone 2 months of intense physio and pretty much went back to sitting in a riser recliner chair and hardly moving. He was also sat in adult nappies and using wee bottles and not making any attempt to try to use the loo or even the commode.
It’s hard to watch them not help themselves isn’t it especially when you’re struggling yourself. The guilt is horrible, I’ve spent years trying to help Phil and he’s never really done much to help himself. It’s always been someone else’s fault and never his own. I fought to get the hospital to agree to him going to a care home to under go physio as they wanted to send him home bed bound. The final straw for me was when he came home and didn’t try to keep moving. It was almost like he got so used to someone doing everything for him that he expected it to continue.
I’ve also been with Phil for 35 years so understand how hard it is.
You do need to take time out for yourself if you can, can carers come in while you go away for a break?
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Escaping to freedom now and then isn’t selfish or a luxury or selfish, it’s absolutely vital. If you became ill, how would your caree manage? Your health is very important too. I go to Greece for 2 weeks every year (only possible due to an inheritance). Whenever I’m ill or fed up, I do something holiday related. Tonight I’ve been sorting out which beach dresses I’m taking and putting them in their packing cube. I’ve just received what is supposed to be some swim shorts, only I was sent a 40F bra instead! It will go back, of course, but there is plenty of time, and we’ve had a laugh! When I was disabled and couldn’t drive far, I rented a cottage and took my sewing machine and some fabric. We all need peace and quiet, time to relax and recharge our batteries. I’ve often gone in January, very cheap at that time of year, but as long as the cottage has heating it doesn’t matter if it’s cold outside.
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Hello,
Your trips sound very nice and i feel same ive been away to Devon in February and November time its the change of scenery isnt it.
The last trip i went away was January this year actually and he coped quite well i left a variety of different foods in fridge etc, all the essentials for 4 days i think it was but i think since then he has become abit more confused and struggles with his phone at times too. I dont want to get there and i cant get in touch at sane time i need a break, i might just have to do
it when a room comes up at my usual place.
I have a daughter who has been unwell for years too and although we dont live together thats been a big strain on me and other half as she has given us alot of worry over years. I feel i should have retired and being enjoying my new found freedom but it doesnt feel like it.
I hope you have a lovely break when you go, is it soon as your packing?
Jackie
I’m going to Devon next month just for 3 days, in a little village near Axminster called Colyton. I spent my childhood summer holidays there staying with my grandmother. We had such happy times together. I won’t pack much for that, but later in the summer I’m going to Corfu for the first time, with Solos Travel. I’m planning what to take and have even put some things in packing cubes today. Next weekend our steam traction engine will come out of winter hibernation and we start getting things ready for two shows in July. An awful lot goes on before a show, and then it all has to come back home again. The engine does 4mph so eldest son leaves home as soon as it is light to avoid the traffic. He wakes up everyone en route, it’s so noisy, but people love seeing it and ask when we will be going past again so they can take photos! By the time it’s all home and put away we are all shattered, so the more I do now preparing for my holiday the better. When my husband was alive we went to a different show every weekend, taking the caravan too, so I am a great believer in lists!
Hi Sue,
Yes its very hard when all i want is to escape for a while i feel awful but sometimes i go to bed to try and sleep to escape my situation it blocks it out for a few hours.
Im sorry your going through so much too, going through all that physio and then he cant maintain it, how long has your husband been unwell for? Mine had Prostate cancer a few years ago and he had the Brachiotherapy radiation pellets it wasnt a very nice experience but he was so positive after and even went vegan from being vegetarian on the Consultants advice as he said eggs were bad due to the hormones in them. Then we had a big loss which upset us followed by car crash and its like hes just given up really. Do you have any helpers? I dont as its not been diagnosed yet but waiting for memory clinic to send appointment.
As far as going away i have no one who can help unless our Daughter could pop in but shes unwell herself so not ideal. I might just have to tell myself im going but so far thats not worked for me. I did manage to go out for a few hours today though so that was nice.
I go to a group once a week its run at a Church and they have things to do like knitting, colouring. Scrabble, puzzles and tea and coffee and biscuits the ladies are very nice i found out through a social prescriber as i had isolated myself for a long time and i find it helpful. Do you go to any support places?
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Hi Jackie, I completely understand as I’ve felt like that too. Phil has had mobility issues for around 20 years but it’s got much worse over the last 3 years. He’s had kidney failure in the past. He’s also a chronic insomniac so last year was hardly sleeping and we think overdosing on medication, he would sit there and literally fall asleep in the daytime while on the phone to a dr or in conversation with someone or eating a meal!!! Last year he had a stroke, he then had a twisted bowl caused by a hernia then he caught sepsis. The hospital stay after the sepsis then led onto him staying in hospital followed by the physio care home for 7 months as he was he’s bound in hospital and couldn’t then walk at all.
Sorry to hear of your situation, these appointments take so long to come through but hopefully you’ll
hear from the memory clinic soon.
Phil had carers coming in doubled up
4 times a day for the last 3 weeks he’s been home but we really struggled as he was doing hardly anything to help himself. He was weeing in bottles and sat in adult nappies soiling himself. He wasn’t making any attempt to go to the bathroom (he can now walk on his frame) or use the commode by him. Like you, it feels like he’s just given up. This leads to hugh frustration on my part!!
I’m glad you managed to go out for a few hours, it’s important. Can you afford a private care co to come in for a few days so you can have a short break away?
I don’t go to any support places.
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Hi Sue,
Sorry for delay.
You sound like you have such a lot to cope with i dont know how i would cope with all you have as im not so good myself on some days. It must have been nice to have your house to yourself whilst he was away though. Did you arrange the carers? I have actually booked some time away end of June i told myself i need the break, if our Daughter wont stop by i think i must try to push myself to go because we are separated after all i think i just didnt see this coming or i would have left years ago i feel such a fool now as its my own fault
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Hi Michael
Thankyou for your message we still waiting to hear from memory clinic.
I have booked myself a few days away end of June i just hope i can go
Take care
Jackie
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I meant to say he had his eyes tested this week what a palava couldnt do any of the eye checks before the actual eye exam, she kept saying keeping your eye open but i think he was closing it and couldnt seem to do it. Have to go back to have drops put in but at least weve ordered some glasses, fingers crossed he can see through them. Optician wants him to wear all day but i dont think he will…
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Hi Jackie, that’s okay. It was good to have the house to myself for the 7 months, I think that’s what made me realise I didn’t want to carry on as it was. The carers were arranged on discharge from the rehab centre by the local authority.
I’m glad you’ve booked the time away, you deserve it.
I know what you mean about separating years ago. I also should have but was thinking about how it would have affected our daughter. Hindsight is a wonderful thing.
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Hi Sue,
Yes it certainly is, the times ive thought it and when i do i think where will i go plus where will John go its just not possible. Everywheres so expensive and we have a tiny terrace.
I bet those 7 months were almost like a holiday i keep dreaming i might get some time but i cant really see it unless a miracle occurs my therapist said it might even be too soon to diagnose him at the memory clinic. Judt hope i can get away for those few days and forget home for a bit.
Do you like reading? Ive managed to do a bit i excape when i read and it does help. Yesterday i went to my favourite coffee shop in town i always sit on my own but it feels like a bit of freedom for a couple of hours…i missed my group this week i was just too tired, must try and get to next Thursdays one
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Hi, I get how tough it is especially when you won’t have a lot each from the sale of the house and then if you were to rent somewhere it’s so expensive.
There were lots of highs and lows during the 7 months, Phil was having anxiety attacks and pseudo seizures especially during his time in hospital, things improved in the Feb when he went to the physio care home. For the 5 months he was in hospital I was visiting for 6 evenings after work not knowing how he was going to be when I got there. I don’t mean to sound selfish and know it was obviously a lot harder for him than me.
I hope you manage to get away too, can you afford to pay for carers to come in while you’re away?
I love reading and always have a book on the go. I like crime thrillers and am a big fan of James Patterson. What do you like reading?
That’s good that you were able to pop into your favourite coffee shop. I went off last weekend and looked round a local town I don’t normally go to and stopped off for a cuppa and slice of cake on the way home, not something I would normally do but I enjoyed time alone.
Hopefully you can go to your group next week 
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I can relate as my husband is 85 and I am much younger. I have been officially caring since Jan 2013 but unofficially much longer. He is medically non compliant. I too wish I could get him out of the house as he is very difficult and I worry he is a danger to himself. The Memory Clinic discharged him last May as he passed the memory test but I am convinced he has dementia.
I love reading too and Chair a Book Club but sadly husband has to come too and he is becoming very disruptive. I honestly did not think he would still be alive by now but on and on he goes. It takes every bit of compassion I have to give him his tablets.
Can only send cyber hugs.
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