Hello again
A little sad this evening. Hubby said he is really happy with the clock I bought him. Like to believe it does keep him focused AM and PM. Had reason to ask him what day is it when we were in the lounge of nursing home. He replied Thursday October! For some bizzare reason I thought it would keep him focused for the day even if he wasn’t in sight of the clock. Whoops! Another pull at the heartstrings. Apparently he asks for me in the mornings. Am pleased to know that and not pleased if you know what I mean? A slight tetchy moment today. A man visiting his wife said he knew how I felt when I walked away with a tear in my eye. He said it’s murder trying to leave his wife. She calls him all the names under the sun and is there till midnight sometimes. Poor man. I only tell you this because I am teaching myself to go when I feel ready (4 or 5 hrs max). No intention of still being there at midnight. ! At least I know if going to get negative reaction it could be after an hours visit or 10 and the hurt will be the same. I’m not worrying about this man I promise. Am sure the staff try to help. Just feel for him.
Have just treated myself to fish and chips. Life in the fast lane ay. Lol
Oh dear. Have a a dreadful row with my younger daughter. I felt taken for granted about something completely different to hubby’s situation. We never quarrel. So it’s hit us both very hard. I honestly would do anything for my daughters and their families. I just saw red and said something before finding out facts. She has felt for ages I should go to the doctor. I don’t want to. We’ve been talk on the phone for over 2hrs. Not about the issue I was so cross about. Am hoping it will blow over now but think it’s quite raw with her. I’m mortified. Am sure it’s the greif we are feeling but we both could have done without it
Hubby was OK today. Had bit of chat but he was quite distant at times
The manager was talking to him when I arrived. Hubby didn’t know I was behind him. Whatever the chat was about hubby said I protect him. Pulled at my heart. Xx
Hello all. Hope you are coping OK. Roller coaster days for me. Am pleased to say the quarrel with my daughter is fading. Had yesterday off from visiting hubby. My sister came to me for lunch and catch up. The solicitor also came to give advice. He is going to assess hubby once for POA. So will have to see. At least he had the decency to explain I can apply for COP online which is much cheaper should it be needed.
Unfortunately, hubby has become aggressive at times in the nursing home. Have witnessed it before in the hospitals. Saw some today but it wasn’t directed at me. Still upsets me to see it. Logically I know that the home will have to address it and it’s the dementia plus strokes, not hubby. It’s very very hard to take emotionally though. The manager said they may have to tweek medication. The staff are expressing concern. The manager told me not to fret but how do I not?? Hubby is frustrated.
Am slowly losing him to this wicked disease.
Hi Pet,
Has hubby a ‘good’ time of day? If so ask the solicitor to attend at that time.
So distressing that he is sometimes ‘stroppy’. It must be so hard and no wonder the anger and frustration comes out. So hard for you too but you are right to hang on to the thought that it is not your husband but the disease. Would it help to look on it as a, well I’m thinking symptom, but I don’t think it’s the right word, manifestation maybe, of the disease? Something like a chicken pox rash, yellowing from jaundice, and all the outward signs of MS, Parkinsons, and so on. I’m not trying to belittle or compare. I’m trying to say that the effects of the disease are not the reflection of the person, but of the disease.
Pet I am so sorry that this has happened to your husband and to you. It’s so cruel because it’s so long drawn out.
Know that I am thinking of you and sending you one of those virtual hugs. ((( )))
X
Elaine
Pet, hi
You say your daughter’s been on at you for ages to go to the doctor. But you don’t want to.
Why does she want you to go, and why don’t you want to go?
I’m going to say that from my perspective, unless there are things going on I don’t know about from your posts, please do go. One of the things I did ‘immediately’ my husband was diagnosed with cancer was to have check ups myself. This was partly because we’d been so shocked that he was DX ‘out of the blue’ (a mild but persistant cough) with terminal cancer (DUUUUUUH - where the HELL did that come from??? was our reaction!!!), so it brought home just how incredibly easy it is for something really, really nasty to ‘creep up unnoticed’ (!).
But mostly it was to reassure both him, AND our teenage son (and me too!), after the nightmare of discovering just how ill my husband was that at least there was nothing wrong with me, or if there was, it wasn’t going to creep up unnoticed! (It actually ended up with me having a hysterectomy for a potentially dodgy cyst - I just wasnt’ taking any damn chances!)
That’s what’s making me ‘read’ your comment about your daughter wanting you t go to the doctor - that it’s BECAUSE of what is happening to your poor husband, that your daughter wants to ensure that ‘nothing nasty’ is happening ‘unseen’ to her mum as well…
Now, I know that it’s very very common for us all to want to ‘not know’ about any ‘something nasty’, but in medical terms there are few diseases or conditions that are not preferable to DX early, for the maximum chance of intervention that is amelioratory (hopefully!).
Is there something in particular you are frightened about? (Don’t have to say here, but is it something that is also frightening your daughter?)
Personally, I’d say that, right now, with all the sad, bad things happening to your husband, you have to do what your daughter wants, because she takes priority over you!
Please excuse me if I’m getting hold of the wrong end of the stick completely here, but right now, I’d say your daughter can do without any more stress about her parent’s health.
I’m also wondering whether you may be thinking ‘I HAVEN’T TIME TO BE ILL MYSELF NOW!’ in a sort of semi-panicking fashion! That’s understandable, but not helpful long term.!
Anyway, FWIW that’s my take on it. Glad your row was resolved. You are, totally understandably, more than likely to be all on edge right now.
Hi Jenny. You have put an interesting thought on my family and my situation. My daughter wants me to go to the GP. She feels he may offer mild antidepressant to help me through. A couple of family members take them for different reasons. I do not wish to do that although I can understand why others do and am glad medication helps. Oddly, she had to go to GP for another reason herself, burst into tears etc. Her GP offered her mild AD and she declined.?! I’m not in bad health luckily. Heartbroken and scared. Be glad when the financial issues are sorted. Am chipping away at these things. However,it didn’t enter my head that she wants reassurance that all is well with me physically. I had the yearly MOT last Sept and all was well. I don’t do medication easily. Can only take I nurofen instead of the recommended 2 otherwise I get sleep paralysis and have strange dreams. Very unnerving. You are right though I have thought I haven’t time to be ill. My sister and very good neighbour say I’m coping marvelously? The admiral nurse said I seem to be coping well. It’s a lonely time even with my lovely family living close to me. I take what you are saying and it’s given me food for thought
Hi Elaine. Thanks for the virtual hug. Really helps knowing I’m being thought of, and that people can put a different take on the situation as Jenny has done. I’ve had a strange night. I really thought hubby was behind the bedroom door arguing with himself as sometimes he used to. It was so real to me. Took ages for me to get myself together. Am so concerned about the aggression that’s reared its head again. I know the nursing home will have to address it and that I can’t do anything about it but…
It’s a dreadful admission but it makes me even more hesitant to visit. I go with the thought ‘what’s today going to bring’ every day. It’s only been 2 weeks and this is for the rest of lives! There are times that I want to leave the nursing home because the other poor residents start to affect me. How awful is that.
Pet, the staff will be well trained to deal with any behavioural problems, that’s why he has round the clock care now - and it’s why you can’t care for him any longer.
Your feelings are entirely natural, be kind to yourself. Try to do something special for yourself every day now, like going for a walk, having a coffee, a long evening bath with some special bubble bath or similar.
It’s a dreadful admission but it makes me even more hesitant to visit. I go with the thought ‘what’s today going to bring’ every day. It’s only been 2 weeks and this is for the rest of lives! There are times that I want to leave the nursing home because the other poor residents start to affect me. How awful is that.
It’s not ‘awful’ Pet, it’s quite normal ! I think that all of us that have, or have had a loved one with dementia being looked after in a Care Home have felt exactly the same at some point or other.
When my Mum was in her Care Home I started off by visiting virtually every day and most days would come away in tears; it took a while but I did finally accept that whether I went every day, every other day or only once a week and whether I stayed for an hour or all day it made no difference to her - she didn’t remember that I’d been. Eventually we had a ‘routine’ whereby I visited for a couple of hours every other day; and took her out for coffee in our local shopping centre one afternoon a week. To be honest it didn’t seem to worry her whether I went or not and I suspect my visits were really to assuage my own conscience 
It’s only been a couple of weeks, so early days yet - it will take time to get used to such a big change in your lives. Try to be ‘kind’ to yourself and don’t try to do everything at once.
Hi suzieq. Thank you for your post. Am trying to make a day a week where I don’t go. I didn’t on Tues and he didn’t ask my daughter’s where I was this time. Previously he has. He wasn’t in the best frame of mind with them towards the end of their visit. I do believe he has deteriorated a little. Other visitors long established have befriended me. One lady visits every other day now. Her husband’s dementia is at a higher level. Another male visitor takes every Sunday off. His wife doesn’t know who he is anymore. A very first lady she is too! So although I still have dreadful guilt I believe I can start to take a day with an easier conscience?? I won’t be taking him out. I don’t drive. Maybe my daughter’s will eventually with their husbands. Doubt will go with them. Am not ready to yet. Am not ready to go on activitys with him yet either. Maybe will be later on. Am taking my time on these decisions. Xx
Pet, I wonder if your daughter is worried you’ll ‘crack up’? In that case, one option MIGHT be to do what she wants, go to your GP, accept any prescription of ADs…and then simply not take them! Your daughter might be sufficiently reassured that you’ve got them if you need them (a sort of mental lifeboat for you!)??
It isn’t entirely ‘risk free’ as a strategy, as obviously the prescription will be on your health records, and I quite appreciate that you may well not want that! Admitting to any kind of ‘MH issue’ is difficult for many of us (I can remember I went to my doc under huge stress at work - dreadful manager at the time I just could NOT work with productively! - and said how stressed I was, and he said ‘You’re depressed’ and signed me off …I was glad to besigned off (it signalled to my manager’s manager that thigns were NOT OK in the department and effected changes!) but I WAS most put out by being labelled depressed when I was NO depressed I was stressed! Quite different conditions thank you very much!)
Also, may I contribute my own experience again which may (or may not!) apply. When my husband died I was almost automatically (!) prescribed ADs (probably routine, just about, I would think), but the ADs I was prescribed was Diazapam (my all time fave!). The idea was that it acted as a pharmaceutical ‘glass of sherry’ (well, that was my take on it!). I could take one ‘as and when’ I felt particularly emotionally frail, and it would give me a bit of a respite from the overwhelming grief and collapse etc etc.
I know that Diazapam and similar can become very addictive, and that in itself is a downside definitely, but I personally find that using it ‘as a glass of sherry’ when I feel particularly bereft, works well for me. I like the ‘occasional’ aspect of it, and again, the ‘lifeboat’ aspect (or perhaps more like a rubber ring to cling to when I can’t swim myself for a while?).
Obviously, if one finds oneself taking them more and more, instead of occasionally, then that would be problematical.
(My real, real dislike is for those ‘Live on Me’ ADs, like Prozac, which you have to be on for months and months and really worm their way into your brain - seriously scary! Loss of all control to my mind!) (my SIL and neice are on it, and it scares the hell out of me!)
I wonder what kind of ADs your daughter was offered? I do think, though, it’s highly significant she didn’t want them - hopefully it will help her realise why you don’t want them either!
PS be slightly cautious of resorting to real glasses of sherry too often!!! I managed to be cautious when my husband died, but I know my MIL ‘took to the gin’ when she was widowed. It’s very, very understandable, obviously, but has to be watched out for. (She surfaced after about six months or so, and then reverted to her daily early evening G and T - it was one, sadly, one of the signs of her worsening dementia in the last year that she’s no longer noticed she doesn’t get them in the care home)(they were happy to let her have one an evening at her request…now she never asks. So sad in a way…)
I think ‘taking time on decisions’ is the absolutely right attitude to have. You are feeling your way on this sad, sad journey.
Did I mention already the expression ‘the new normal’? It’s used in Cancerworld to describe ‘life after DX’, and to indicate how gradually we do get used to ‘the new normal’ whatever that new normal is (or will become).
I used to feel, after my husband’s DX, that it was like we’d been driving along the motorway, very merrily, with everyone else as well, all the cars zooming along pointing towards things like ‘Reitrement Planning’ and ‘Holidays abroad’ and ‘Empty nesting’ etc etc, and suddenly our car veers off a slip road on to a quite, quite different road, marked ‘Operations’, ‘Radiotherapy’, ‘Scans’, ‘Putting affairs in order’, ‘Final family holidays’, ‘bereavement counselling’ etc etc etc.
I wanted to scream and shout ‘GET ME BACK ON THE MOTORWAY!’ but of course, there was no way back. We HAD to accept this new road, this ‘new normal’.
I don’t know whether that’s a helpful concept for you, but maybe? It will be a frightening one, no doubt about it. A desperately sad change has come into your lives, one you have no control over whatsoever, and ‘acceptance’ is the only option…or perhaps ‘resignation’?
From now on, it’s a case of grabbing and celebrating whatever ‘good bits’ may remain, and really cherishing them.
May I also say, your posts are such an eloquent and heart-sad description of what happens when someone we were once partners too, enters a twilight world of illness. Please do ‘copy and paste’ all your posts into a personal diary maybe - in years to come you may cherish them. I kept a ‘private blog’ I guess one might call it, throughout my husband’s illness, and afterwards.
I still write to him sometimes? Would this help you at all I wonder?
Just a few random thoughts. Discard or ponder, as it suits you.
Kind wishes, at a sad, sad time, Jenny
Oh dear. I’m feeling very anxious. Hubby has “kicked off” again in the nursing home. No one has been hurt. But some of the assistants have said they are worried about the patients who are much more frail. 2 of them told me that they weren’t given the full information re hubby from the assessment Ward he was in. I spoke with the manager of the nursing home and he assured me that there is no intention of moving hubby out. His medication is being tweeked starting tomorrow. I was also told that he was aggressive after family left the other day. I had chatwith hubby. He seems a bit paranoid again. Doesn’t trust the staff etc. He told the manager that I staff said we will have you out of here? I doubt that was said. I really hope not. The manager made the staff member go and explain to hubby that it’s a misunderstanding. They shook hands afterwards.So as you may guess from my rambling post I feel very confused by mixed messages. There did seem a strange atmosphere with some staff today. The manager told me confidentiality that there were issues with staff to do with the new minimum wage.I understand that issues do arise with staff. It’s human nature. Not sure if it should be obvious to visitors though. It’s a rambling post I know but helps me to do that
Pet, it’s very early days yet, for you, hubby, and staff. Maybe ring the manager to see how he is (husband, not manager!) and then decide whether to go in or not? Staff should not change care standards due to minimum wage issues!!!
I decided to phone at about 7 this Eve. Spoke with a nurse in charge. He was happily watching the TV in the lounge. He hadn’t kicked off because my eldest daughter and myself had left.(she had turned up about 3.30.) I almost felt guilty when that was said.( he starts getting aggressive when family leave). When I said I can’t stay all Eve to stop that happening was told of course not don’t worry. Don’t worry indeed!! I am considering phoning in the morning to see how he is. I may not go if I don’t like what I hear. I really would like Sunday to do what I like though and was aiming for that.
I’m usually supportive of the staff and grateful. Today I was very uneasy .My daughter requested a urine test to be completed. He’s on long term anti biotics but it won’t hurt to have a test done.
Tonight I feel that staff chose the job, get paid to do it so must get on with it. That’s not usually my attitude and it’s poor. Can think it for tonight though. They do deserve more than the min wage.
Hope everyone is having a reasonable evening. Xx
I too am on a new path, I suppose it is a matter of recognising that after a long loving relationship grief is a big element.
Sometimes it seems easier to be compassionate to others than myself. I am trying to lower my expectations of my best friend and with more difficulty myself.
We are still in the early stages although the signs of vascular memory loss were about for many years and I was trying to cover as my husband was active on an important committee.
He was still good at what he did but needed reminders about phoning, letters and things in general.
The GP at the time brushed my concern away.
Looking at the posts I feel grateful that I am not in a worse situation, I am looking ahead in practical ways, bills have to be paid!
I am trying to have faith in the process, trying not to cross all the I and Ts. I am trying not to look ahead too much. Some things do happen in their own time for the best.
Mornings are not too bad but as the day goes on my tiredness sets in.
Allan still has long term memory so sometimes wants to act as if we could still carry out things far more complex than either of us could manage now. His cognitive skills have declined so coping when things go wrong is a problem. I do have to be watchful about surcurity as he is not to bothered about many things he was so hot about.
Sometimes I am having to preempt, sometimes decide via suggestions. Sometimes just decide quietly but I do not want to take away the power he still has.
Thanks for listening,
BB. I phoned the home as you suggested. Hubby had another episode. The word violent was used? That’s a very emotive word and when I spoke to the manager he agreed. Bad choice. However I have decided to stay home today. Feel to emotional to cope. I’m beginning to see the the advice that’s given that pacing visits are worth considering. I still love hubby very much and this is unbearable at times. My head is telling me that really I love who he was and not who he is becoming. Am sure people on the forum understand my meaning?.
A. I have total empathy with you. It’s a very sad journey you are facing. And I agree. Basically it’s hard to follow the advice etc we can give to others. Please keep in touch with the forum. All of the lovely people have our interests at heart. You can pour it out here without being judged. Sending you a hug xx
Dear Pet, I really feel for you. You haven’t mentioned whether you husband is still under a CPN or Psychiatrist and I would have thought he would be getting regular visits during the ‘settling in’ period which is what he’s going through, they’re the people who should be sorting out and ‘tweeking’ the meds. Aggression and violence are VERY emotive words which can affect the way people approach him. People with dementia can’t always express what’s going on in their head - but they can pick up non-verbals from the people around them. Unfortunately a label of aggression can give off non-verbals in the staff - they are wary and expecting it. I speak as a psychiatric nurse who’s spent my life trying to explain this to people. Aggression in dementia is often the last defence, they perceive someone is attacking them so they do it first. It’s nothing to do with them or their previous personality. With regards to yourself I think you would benefit from an anxiolitic such as lorazepam rather than an antidepressant. It can be taken on an ‘as necessary’ basis and you should go to your GP to as for a support group or counsellor. Your husband is young and you’re both going through a lot. Keep strongXX
Hello. Thank you for your support. My husband is 71. Think my first post was misleading. We have been married for 48 years. We are still young though. I’m 66 and didn’t expect retirement to be like this. Hubby doesn’t get medical visitors? There is a review of care plan on Monday and to review his medication. He’s been assessed for continuous health care funding and met the criteria. Well above. That’s why he’s in the nursing home. The problem is that most of the residents are much more advanced than he is in the dementia stage and he is quite frustrated. Unfortunately has declined though. Has been confabulting for a while. He told me yesterday he had been home. His description wasn’t our home though but a big room. He’s been everywhere with confabultings. Wales Scotland on a boat, all sorts. Am learning to go with it but my heart shatters into smaller fragments. No where is perfect is it. I’ve just had a guilt kick for not visiting today. Knew in my own mind my emotions were running 2 high.
Who’s going to be at this review? I’m concerned that you’re saying he’s got no medical input as it sounds like he needs it. If there’s no CPN/psychiatrist involved you should insist upon it - has he never had a referral for one or the other? Medication or proper input could make all the difference to his quality of life. With my Mum I had to wait for her GP to retire before she got any kind of help - sometimes with dementia there’s a certain attitude of ‘we can’t do anything’ among the professionals - you need to make sure you’re dealing with the right ones.xx