Just had my dad come to live with us he has Mixed Dementia

[clareglen]

Whereabouts in Cumbria Claregen? I am in Carnforth Lancashire and the Social Worker told me everyone is entitled to the respite vouchers, maybe you should check maybe its changed...

Carlisle. I checked county council site again when I read this, in case I was missing out, cos we are just paying for respite & everything is means tested here. In fact they are only doing assessments for critical cases. Had social services out last year & they told me to organise respite myself & kept badgering me to see if I'd done it then when they phoned Christmas Eve to check I'd done it & I said I had, they said they wanted to close the case. Also our assessments are done through Carlisle Carers & they did a carers one with me & just signposted me to places. No-one (organisation) actually does anything to help.

 

[clareglen]

Nice to hear from people in Cumbria. I know there are 3 different teams of SWs just for Carlisle alone. Both my mum & myself are above the savings/assets level, although I have very little liquid assets. Direct payments are means tested so we don't qualify. This gives advantage of just phoning a care home & quite a few have vacancies at the mo, seem to have a fast turnover, not sure if that is good or bad! We've tried two for respite, one was better than the other more expensive one. I'm thinking of trying a third before Christmas. This should give us a perspective on which is the best for maybe permanent in the future. Last couple of days her mood swings have been bad. Just cannot predict them & it's nothing that's happening just something going on in the brain. For those who get 4 weeks paid for respite it isn't enough.

 

[loopylyn53]

Respite

Hi guys, What a good day I had yesterday, even my husband said I was completely different! I knew as soon as I saw him in the morning it was going to be a good day, he was a pleasure to be around, and last night I started thinking how long will this last this time? Well he seemed different this morning gave him his breakfast and said to my husband that I thought he wasn't going to be so good today (as he was setting off for the golf). I went in to check on him (he has his own sitting room) and he started to tell me that he realised why he had fallen asleep earlier, it was because his glasses were resting on top of his hearing aids so distorting his vision and that's what made him go to sleep. "ok" I said "glad you sorted it". Just gone in to take him his coffee and toast and he wanted to tell me about a mistake I had made yesterday. "Ok" he said he woke up wrapped tightly in his beclothes and said that I had put them on wrong, so I go into the bedroom to see what he was talking about and he had demolished the bedclothes. The top sheet was turned around and covered the whole of the bed, the quilt had been turned the wrong way and he has taken the electric blanket off of the bed and unplugged it all (that was the worrying thing for me) He did this all in the dark, so I have remade the bed and taken him in to show him that it is no different from the way I always make it. But he is not convinced.... sighs....... we are back to the bed fixation, so I reckon its going to be 5/6 bad days and 1 good day....... Think I will get onto SS today, meant to do it yesterday but caught up with all my housework. I can see in his face that he is going to sulk all day, because I disagreed with him Yes I was right he has switched off the television!

 

[Sam and Dave]

Hi LoopyLyn,

I have just been sitting here reading through,Whilst trying to not hear Mil calling the Dog over and over and Over,We have had Mil for 6 months and I know exactly how you feel.Although it doesnt help you as such. But we have finally taken the decision to put her in a care home.We feel awful,But we have become miserable stressed out prisoners in our own home.Mil has got a lot worse in the last few months, Up and Down all night and agitated all day.Wont go to Day centre anymore and doesnt want to go out.

I hope things get sorted for you soon.

Sam xx

 

[loopylyn53]

Sam & Dave

You will not believe how those few choice words have made me feel. I know that I don't want to do this, however I am engulfed with guilt that I can feel like that especially with it being my dad. I am 61 (not in the best of health) and we have only just retired and you never know what is around the corner for us!! Miserable and stressed out says it all!! And knowing this is only going to get worse is scaring the hell out of me. I have just bought a baby monitor and I am going to sleep downstairs as he was obviously doing this in the middle of the night! 10 weeks and still waiting for SS assessment

 

[Sam and Dave]

Hi LoopyLyn,

We also feel guilty,But we are not living, We became Grandparents 3 months ago and rarely get too see Our Grandaughter. You dont know what is round the corner,And we are only here once.I am sure the People we are caring for would not want us to be feeling like this and not living.Today is not Great here either feeling really stressed.
Its strangely comforting to know we are not alone! Mil is going in to a home in the next Two Weeks. Now I know she is going ive realised We could not have carried on. I take My hat off to all Carers. Im fed up with Listening to all the so called experts about caring,No One knows untill they have done it,This site has been the most supportive and offered the best information that is out there.Purely because we are all Living it instead off talking about it and Reading it all from a Medical Book.

Sending you lots of love Lyn xx

 

[loopylyn53]

Sam & Dave

I stand and applaud you!! You have given me the strength to be able to say to everyone (not my friends on here they know) close to me, my brother, sister, friends etc., that I can't do this and not feel guilty! I agree, it is easy to stand on the side lines and give advice but let them walk a day in our shoes and it would be a different kettle of fish. Last week I was worried that my husband would stop coming home because he didn't know what he would be walking into and we have had a brilliant marriage up until now. Yes if dad knew the stress and worry he was causing he would be mortified. I am glad you got things sorted, you sound like a very caring person please keep visiting the site because I am sure you could help may other people. Enjoy your new grandchild... xxx

 

[Sam and Dave]

Thankyou Lyn,

I will keep up to date on how things are going for you, It has made me feel better talking to you today,I feel Liberated! It was though it was meant to be today seeing your post. And isnt it strange how we worry about explaining ourselves to other people. Who pop to the shops when they want,Go out when they want, Heres to Living Lyn xx

 

[loopylyn53]

Sam & Dave

Couldn't have put it better myself!! Are you the Sam or the Dave? lol ...... Wishing you only good things xx

 

[Sam and Dave]

Im The Sam lol

 

[loopylyn53]

Sam

Do you mind if I put you in my friends list?

 

[Sam and Dave]

Thats Fine Lyn,
Would be good to know how you get on,And I can let you know how the move goes.
I Know its going to be Hell,Im sure I will be on here asking advice. I know we are going to have to tell Love Lies as someone on here called it.

Sam xx

 

[loopylyn53]

Arguing

Had a row with my husband last night, he played golf in the morning came home at 3 had a shower I made him something to eat and went off again to play at another course and got in about 10pm. I had had another bad day with dad, and last night I was ready to throw in the towel, so I just exploded when he got in. He said that I should have told him he couldn't play the second round of golf, but I said you shouldn't have even contemplated it, you should have explained that you will have been away 5 hours already and needed to be back to give me a break. I know he is not my husbands dad but we took this on together and I don't feel like he is helping me at all!! Is that wrong? I wish someone could wave a magic wand and make it all go away...sighs..... Something is going very wrong, we just don't talk anymore, I guess he must be just as hacked off as I am.

 

[Sam and Dave]

Morning Lyn,

Your Husband is in the same position as me,As its My Mil that is with us.
And we took it on together,Sometimes when I finish work I feel that I could drive past my House and keep on going! lol. When things are really getting me down I dont always tell My Husband how bad im feeling or stressed if he is having a bad day to.Its always back to the guilt thing. I think you should sit down and be Honest with each other, Dont let it come between you and your Husband. Im Glad we have done that and have decided to put Mil in a Care Home. But obviously everyone is Different.

Ive got to go and visit My Parents today hopefully you have a better day,Catch up with later.

Sam xx

 

[Pickles53]

You're right that you need to have a serious talk with your husband. It was surely a joint decision that your Dad came to live with you. It may be that your Dad's problems are greater than either of you had realised, but it doesn't seem reasonable that his life should carry on just as it did before while yours has been turned upside down. Right too that he should not need to wait for you to ask for help, he should step up to the plate and offer help.

Hope you can find a middle way that will relieve some of the pressure and stress on you by talking it through, but if it's really not working be honest and admit that you need to look at residential care. Your lives are important too.

 

[clareglen]

Something is going very wrong, we just don't talk anymore, I guess he must be just as hacked off as I am.

It sounds quite normal to me. We don't talk anymore either. My mum, who I look after alone, lives next door to us, so it is like she lives with us. I'm an only child but hubby doesn't help, nor adult children. All of them think she should be in a home. You're not being unreasonable, but you may have to accept the situation. No point taking it out on each other (easier said than done). I decided yesterday that come the new year I think she will be ready for a permanent care home.

 

[loopylyn53]

Carers Assessment

Does anyone know how long it takes for someone to visit and do the "Carers Assessment"? I got up this morning and thought I need something to look forward to, to be able to carry on Same routine day in day out is mind numbing and I feel like I am becoming invisible. Trying to stay calm, although my blood pressure is through the roof (I am on medication) keep getting small burst blood vessels in my eyes.........

 

[clareglen]

Does anyone know how long it takes for someone to visit and do the "Carers Assessment"?

Think it depends on the local authority. They've contracted them out to our local Carers organisation. So I just made an appt with them. Happened quite quickly, but don't get your hopes up. They just signposted me to other places for me to organise daycare. I know what you feel like though.

 

[rogibob]

do you want to meet up,i live in carnforth and have looked after mum for two years.

,

It was becoming apparent through daily phone calls that my dad was not looking after himself, so we decided to move and have him come to live with us. I will manage.... but I just feel so overwhelmed! I did not realise he was as bad as he was, in actual fact I am not entirely sure what "mixed dementia" is. He has been with us for a month now and his physical appearance is better by 100 percent, but I feel that I have no time for me.... Does that sound selfish? From 5.30 in the morning to 11pm at night it is constant care, we only moved in here 6 weeks ago and there is still so much to do. It just feels good to vent all of this with people that understand what it is like. I don't know who to talk to or who to contact for advice.

 

[Motherhen10]

Complete solidarity with you. I lived with and cared for my grandmother throughout her Dementia until she passed away. Every day was a roller coaster. I really would contact Social Services. The only problem with them is that their assessments last an hour and as you all know, an hour is no where near enough to really see the reality of the person's illness so you must be persistent. They can put you in touch with fantastic organisations that can offer you daily morning carers, cleaners, a carer who comes for a morning or afternoon once or twice a week as company for your dad and respite for you for a few hours. They also have carers who can come of an evening if you'd like to go out. They really are invaluable. Through them, we even found a care home who offered part time respite which we couldn't have lived without. My grandmother would go to stay there for a weekend of a week and the interaction was fab for her and the break was amazing for us. Gave us a chance to recharge. We were also put in touch with charities that ran workshops on coping mechanisms and things we could do to help her. The Alzheimer's Society run day sessions for people like your dad in which they do a range of activities such as light physio, singing old songs from their era, dancing etc. My dad now volunteers at one and can't speak highly enough of it.
I can't lie to you, this won't be easy. There will be days when you want to scream at him but you must not feel guilty. We ALL go through this. There will be days where he will vent at you, but you must remember that he is just frustrated because he will sometimes be aware that there is something wrong with him. There will also be nicer times though. Times when you can get him talking about old times and it will freak you out how much he seems like his old self in those moments. With the right care and support, this can be okay. You're already doing a brave and very noble thing. Never forget that. Even if he doesn't thank you directly, he will be so thankful and full of pride. My grandmother would always say this to other people but never to us! Sending you lots of love and strength xx