Hi Jackie
The review didn’t happen. I misunderstood or the manager wasn’t very clear on how he explained? Hubby is having UPS and downs. Early days yet. The quarrel with my daughter is forgotten. It really was very upsetting for us both. She is actually a very good support to me. Both daughters are. Have to say that they acknowledge its different grieving for Dad as he was and me grieving for my husband. Not sure they fully understand though. I know what it is to lose parents,its awful and heartbreaking. They are heartbroken. The pain for hubby is so deep it’s like glass cutting into me?
I’m taking time out today and going to try to do this regularly.
I understand what you are saying about nurse mode. Was thinking next time he says I need the toilet I will say so do I and walk away. Might be worth a try? The staff will see him trying to get up hopefully.
By the way I’m not taking away the pain you feel for your mom or anyone elses. It’s a horrible journey we are taking or have taken. I’m getting adjusted to the staff. As said in a previous post they must tell me all re husband’s behavior or nothing.
I hope you a are muddling through. Thank-you so much for thinking of me xx
Sorry wrong spelling on your name.
I’ve had a bit of a shock this afternoon. When hubby went into the nursing home I explained amongst lots of things that when he was in the first hospital he, in the delirium made several abusive to calls to me. I absolutely understand that it was his confused state. However I just couldn’t go through them starting again. I answered the phone today in a slight panic (nursing home number). It was hubby. It was a nice call even though he was confabulting. We had a chat etc. I asked who was in the office with him and he said no one! I played along and said good you can tell me you love me then cuz I love you! Bless him he said of course I love you. However, the staff should know that at least while he is settling I don’t want calls. Poor hubby another liberty taken from him.
I know if it was an accusing call I would break. Then I worried he was distressed as I hadn’t visited. I phoned the manager who knew nothing of the call. He said he would make enquiries as to why it happened. Don’t want anyone in bother as such. Am I being unreasonable? I could have been out then what.? I really would like my day from visiting stress free if possible. I must add that from the hospital I had 18 or more calls in one day, admittedly from his mobile. He hasn’t use of that. Previewing this post makes me look so selfish. However I’m going to send it. It’s a long rambling post again. Apologies.
Pet, I think you were right to raise concerns about the phone call incident. It’s not the phone call, but surrounding events, which are worrying. Clearly your husband reached the phone by himself (how if he isn’t supposed to walk by himself?), and his absence wasn’t noted for some time (was anyone supposed to check when someone left the lounge area?).
I suggest that next time you are at the home you ask for a written copy of their care plan, so that you know exactly how staff are supposed to be caring for your husband. If he could get into the office un noticed, then where else could he get to, in the same amount of time? Is the nursing home secure, by which I mean is the door locked? Safety must be paramount.
bowlingbun
I cant really see how hubby managed to get to the phone by himself. He struggles on the frame and the staff use a wheel chair for him lots of the time. My guess is he was taken to the office and someone dialled for him? I don’t know but would have thought that a code, maybe start with 0 to dial out would be in place. It is quite secure at the home. Visitors have to use a code to go in and out. I find it so strange that the staff who allowed him to use the phone didn’t speak to me first. I will ask to see his care plan. I did stipulate about phone calls for the time being at least, as to be honest when they were happening I felt quite ill. Something isn’t right. When it was happening at the hospital he phoned the police several times. Just as well it didn’t happen today!. As it was a pleasant call to me its sort of OK? However I am taking advice from you all, the admiral nurse and my friend, that a day from visiting will be good for me even if I do nothing. Its not going to help me if I am anxious. Now the guilt has kicked in again and I was doing well today for the first time really. Its hubbys needs that matter but if I am going to be a wreck when at home its just not going to work. By tomorrow he may have forgotten he even called. S…s law that he wont though!
I hope you are coping well today and I really appreciate your concern xx
Try to think of this as a “teething problem”, but make sure that the manager understands it must not happen again. These are to be expected to some extent (my son has changed support staff agencies three times in 8 months, through no fault of his own). It takes while for staff to remember what he likes etc. Staff have a number of people to care for, so when your husband arrived they might have been on leave/holiday. However, the staff “handover” run by a senior member of staff should have ensured that everyone knew what was required. Maybe find out who was the senior member of staff on duty at the time. (Mum’s home was on three levels, and each level was the responsibility of one member of staff). Also, your husband should have one “key” member of staff, with special responsibility for your husband. Do you know who that is? It’s really important that the staff concerned learn from their mistakes. What is forgiveable the first day is unforgiveable after a month.
Dear Pet, this is my second attempt - I wrote a really long reply and it disappeared! Basically I said that maybe the staff were trying to pre-empt a situation with letting hubby ring you, I’ve been there many times, you try to work out what’s best for the person in an attempt to reduce agitation, but such measures should be agreed with family first. He needs a careplan for this agreed with yourself and you have a right to see and agree with all his careplans. You really need that day off from stress and really it should be sacrosanct. My original post was three times as long and contained better advice - but I’m terrible on a computer!! Keep strongXX Hope this one goes through - I need more sleep!! 
Hello. I did wonder if staff were trying to stop agitation. However he didn’t sound agitated? He was confabulting about being some where he used to work.I still feel they could have contacted me before hand. The manager is going to make enquiries. As BB adviced I will class it as teething troubles. He seemed happy enough when we said bye. Also he obviously wasn’t so tired and out of it so to me that’s good. That’s just occurred to me.
I’ve wasted today. My intentions have gone pear shaped. I was going to go to town. Then I thought no I will do much needed chores. Haven’t done any! I must start to push myself.
How are you today and thank-you for your reply. Frustrating for you that a long post was lost xx
Pet, you really don’t need to push yourself now. The only person you need to please is you. One of the things you might like to practice now is probably waking up, having a cuppa, and then rolling over and having another forty winks, because you can. The housework isn’t as important as going out, having a coffee, relaxing, enjoying the sunshine. Just do a bit at a time to bring it back to how you like it. When I was first widowed, I went out during the day and did my housework in the evening, as that was when I felt loneliest. Enjoy the sunshine!
Forget the chores!! I think that’s a horrible word! Look after yourself. A friend of mine once said ‘I come to see you and not inspect the state of your house, I just accept you’re a messy maid!’ and comments like that help you get stuff in perspective. In my post that went into the ether I said that staff should have spoken to you first, before letting hubby speak to you, but I think I can see where they were coming from. If it’s stressing you out -or even has the potential to do so , he def needs a care plan to deal with it, and I’m still not sure what professionals are involved in his care. It can sometimes happen that someone slips through the net but he should at least have a CPN. I stress you really need that day of trying not to worry about him - but I don’t think you should be doing ‘chores’ I’m telling myself I’m going to have a ‘spa’ day with a hairdo and some other treatment for ME!! and pay someone to do the housework. In that way of offering advice I haven’t quite got round to it yet. (Four and a half years later!!)
Hi Pet
One of my nightmares is that someone, an old friend or a relative, for example, will turn up at my door unannounced and expect to be invited inside. My house is a top to bottom tip. As for the garden -jungle. (OK mini jungle) I try, really I do. I keep the toilets clean and the kitchen, hoover when I can but most of my ‘at home’ hours are spent washing and ironing. Mum produces a lot of washing. Evenings? No chance. Time I get home, eat dinner hubby has cooked I am flat out shattered, and like tonight, sometimes have to go back again to Mum. I came home tonight at screaming point.
I know how important those ‘sacrosanct hours’ are and how often they just do not happen. There’s always, always something.
Just do what chores you really feel you would feel awful if they weren’t done and forget the ones only you know haven’t been tackled, or could wait or a week or so.
Your poor hubby is the one who has the horrid, nasty, damn and blast it, disease, but you are the one in pain. Treat yourself as if you had just had a big op. Very, very gently. Only what you can manage, plenty of self administered TLC, accept any help offered and treasure each and every happy moment with hubby.
Ok usual hug (()) and hand hold plus, what about a virtual head massage? Lean back and imagine phantom fingers massaging your scalp. That’s me!!
X
Elaine
Def a laugh out loud moment with Elaine’s post, I think one one the few things I can manage is to keep the bathroom clean! But she’s right with the therapy. Last week (or could be the week before) I had an Indian head massage, I was told my neck and shoulders were really tense! (I wonder why??) But that night I slept like a log, it wore off quick, which is why I keep telling myself I should do it every week. It’s getting someone in to look after Mum that stops me. I’d advise anyone to have that or a hot stone massage - bliss in my case - but whatever floats your boat is the rule - BUT DON’T THINK ABOUT CHORES!!
Elaine, could you not do the washing at mum’s house? A washer/dryer there would reduce your workload hugely, and it would avoid the need to bring mum’s stuff home with you, making it more your home, not workplace. As for ironing, just give it up, or get someone else to do it. The time would be better spent with your husband. If mum wore cotton jersey (T shirt type) material, it would be more comfortable for her and they don’t need ironing., they are easier to put on and off.
Morning All
I can see from your posts that jobs around the house shouldn’t be a worry.(jakki note I said jobs lol) For the last 2yrs and more the garden and 2 rooms upstairs have been really neglected. Hubby’s health problems were kicking in. The garage is very junked up. He wouldn’t even discard a rusty nail. The refusal to throw anything became almost obsessive. We had the kitchen renewed but the tiling still isn’t completed. I could go on but am sure you get the picture. However I do take your points. I just haven’t the emotional energy yet. Still have finances to sort. At least unlike lots of you I have breathing space and when we are more settled ( will that ever happen?!) I can make a list and prioritise. It’s still a lonely existence even with my lovely family nearby. Thinking about it I started to feel lonely over 2 yrs ago .
Oh well, that’s enough of the woes. I’m much better off than lots and count my blessings.
BB. Ive sent a post and it’s been lost.Love the guilt monster saying! However this evening I don’t feel guilty but disloyal. Have started the ball rolling re court of protection. Hubby hasn’t the capacity for POA. I have to start somewhere. Need to change fuel bill provider and sort several direct debit on hubby’s statements One being an £80 per month payment to a lottery company. He went on a holiday and fell for it. Looking back the dementia was starting even then. He never would have fell for that!! I knew nothing of it until I started checking his statements. I know lots of people on the forum have advised me to wait awhile. I feel the need to start chipping away at practicalities. Am hoping my mind will start clearing? It’s a complete muddle. The emotional pain and the muddled mind are clashing.
Sorting out things for a new way of life is very daunting, and can be hugely depressing, so best done bit by bit. If you promise yourself you will just do one drawer, one shelf, one cupboard, just one hour sorting, that’s enough, but do it every day and you will be making slow but steady progress.
Do you have a trusted male friend/relative/neighbour who could help with the garage? Once sorted enough to make some space, this would make sorting the rest of the house so much easier. Decide what you are going to need for yourself, probably just a very basic toolkit, hammer, screwdrivers, that sort of thing. If you are not sure what something is worth, just check on ebay for similar items.
Having emptied my in laws, my parents’, and my brother’s house, I gradually developed a plan. Whenever I picked something up, I asked myself if I wanted to keep it clean, dry, and dusted for the rest of my life, did I like it, would I use it. Finally, if I threw it away could I afford to buy another one? The answer to almost all of it was NO!
Then was it worth more than £10 - try to sell it on ebay, Gumtree, or similar.
Under £10? Would a charity shop be able to sell it?
Serviceable but nothing special - Freecycle it or give it to the Salvation Army for homeless people - they have recycling bins in all the towns in the New Forest where I live.
I found it easier to fill a bag and then deal with it, a pile of bags is daunting.
Don’t forget what I said about becoming a DWP appointee so you can deal with his pension etc., it’s quick and easy, and then you could start a new account for the pension to be paid into. You do NOT need POA for this.
BB. Thank-you. Its seems an efficient way of sorting. I hour a day and I bag. My son in laws will know more than me re tools etc in the garage. They can have them for their own use if needed. They also will have some idea of what will be worth selling. It’s time on their part. Busy lives with work family etc and they visit and or take my daughter’s to hubby.
I will contact DWPs. It seems I must have COP re the house and car. I contacted the lottery people. Won’t do anything without hubby’s permission. Vicious circle. Strange that the play lottery allowed me to cancel a £10 per week one!! No hassle and very kind. Will start chipping away at things emotions allowing. All this while watching my hubby gradually slipping into another world. Thicker skin and hob nail boots to kick the guilt monster down!! (((Hug)))
Good that you have sons in law to help. Could daughters take themselves to see dad, sons stay home, and you all have a BBQ afterwards, to make it a bit more fun, less of a chore? Is there room for a mini skip for the stuff that “could come in useful one day”. If it’s right outside the garage then anything unwanted could go straight in. A lot depends on the space available, might be best to wait until the car has gone. Personally, I would sell the car now, who can know or tell you off for it? Cars depreciate, after all, so it’s not in your husband’s best interests to wait.
With regard to the lottery payment, have you made an appointment at the bank yet? They have a duty of care towards your husband. It’s up to the bank to cancel the payment, not the lottery people. Given your circumstances, the bank should be working with you to protect his best interests. Somewhere I have a leaflet about the reasonable adjustments banks should make for people with severe learning difficulties, for my son. The same standards should now apply to your husband, and his banking. Next time I find it, I’ll give you the details, I think it was written by the Equality Commission, so carries a lot of “clout”.
BB. Ive just telephoned hubbys bank. They have emailed the manager who knows the circumstances, asking him to call me back as a matter of urgency. Im anxious about going down the COP route if I don’t need to. Its such an expensive way to deal with the finances and all of the traps that go with it. Seems you have to send details of all you spend the money on each year and pay a yearly fee? Im not going to run out and buy a diamond ring etc! All I want is to maintain the home and garden and replace goods should and when required. This is what hubby would be doing if he was fit and am certain its what he would want me to do. If needs must I will but going on your advice ( and others) I may be running before I can walk as the saying goes.
Think I will wait for his call and advice then phone the pensions.
Thank you for stopping me in my tracks.
Reading other posts today this is a minor gripe. Visited hubby today. He was OK. Was the usual ramblings. Last night he was in Glasgow!!
Am learning to go with the confabulations. He said one of the nurses had annoyed him because she promised to help him to the toilet and then took ages. I pacified him re this. Unfortunately, out of earshot one of the assistants told me he had been awful to her. Lots of language and called her a liar. She told me she keeping a wide berth from him today? I had just told her hubby was needing the toilet. ( I walk away when he says on the pretence I need it too) I said it’s not my husband’s normal behavior pre ill days and it’s the dementia. I asked her if she had taken it personally. She claims not but said the f word used so much isnt nice. As if I don’t realise that! Am I being sensitive and protective?
I’m certain the manager would have contacted me if he felt I should know something. He saw me twice today in passing. My thick skin has gone thin again and it spoilt a pleasant visit. In fact I left a little earlier because I went so tense. Hubby didn’t mind. Asked me for some bus fare for later. I gave him some lol. Teething troubles again maybe??
Sounds to me like it’s the nurse needs to toughen up a bit. Most of my male friends either own steam engines or old lorries. Many of them use “industrial language”, when I did my degree I actually had lessons on the subject! I would never pull my friends up for using the F word, it’s part of their everyday language. Anyone nursing a man with dementia should know that sometimes they are less inhibited. When my son was growing up, I explained to him that I knew all the words, so did his engineer dad, but they should NOT be used in my house.