I am having a frustrating day having had little sleep for a few nights, crunched my hip at night but was ignored by wife and could hardly move for two days. Today changed beds washed bedding got her out of trousers, wet, managed to get her to change all clothes other than bra, 6 months on, washed those apart from Always pants, got her to the bath but then she refused to go in,can`t remember last time she bathed, have a mobile hairdresser but a battle every time,she walked out of sons lat week,have to spend an age trying to get her out of car when we go to daughters dismissive of other people and frequently leaving to go back to mam and dads taking all the money and I can get lost. Takes shoes off when she goes to bed but nothing else and puts them back on when she gets up may use a wet wipe on her face. Used to bathe every day and wash hair 3/4 times a week. Won`t go into day centres so I`m stuck and feel awful saying that because my feelings for her are unchanged after 59 years married. I can`t leave her on her own, unsafe. Could scream sometimes.
I'm stuck and feel awful saying that
- Thread starter PJD
- Start date
hello @PJD
a warm welcome to TP
you sound to have a lot on your plate, thank goodness you thought to join this understanding community; come here to have a scream anytime
do you have any support? - you mention day care, and I appreciate it's tricky sometimes to get someone there when they say they don't want to go - so I hope you have had a care needs assessment by the Local Authority Adult Services, and a carer's assessment for yourself, maybe some home care visits would take a bit of the strain off your shoulders and some respite would give you chance to recuperate whilst your wife is looked after 24 hours
do look into Attendance Alowance too, as it helps with finances
https://www.gov.uk/attendance-allowance/how-to-claim
now you've found us, keep posting
a warm welcome to TP
you sound to have a lot on your plate, thank goodness you thought to join this understanding community; come here to have a scream anytime
do you have any support? - you mention day care, and I appreciate it's tricky sometimes to get someone there when they say they don't want to go - so I hope you have had a care needs assessment by the Local Authority Adult Services, and a carer's assessment for yourself, maybe some home care visits would take a bit of the strain off your shoulders and some respite would give you chance to recuperate whilst your wife is looked after 24 hours
do look into Attendance Alowance too, as it helps with finances
https://www.gov.uk/attendance-allowance/how-to-claim
now you've found us, keep posting
I`ve had a carers assessment, I haven`t taken up the hour a week support, it takes half an hour to get to town and back if there is somewhere to park at the advice centres. Attendance Allowance is a difficult one because housekeeping doesn`t count, she sleeps like a log, and doesn`t need help with dressing, washing, just reminding to change and bathe but then she takes no notice. I, prepare her food, I do have Power of Attorney. give her her medication and administer the eye drops she needs and of course stay with her to ensure she doesn`t wander off. Had a call today from Drs to say that she had been wandering into rooms while I was there for an appointment. Problem keeping her close when they are running an hour late. Respite Care I`ve thought of but when she was in hospital and I was leaving she clung and said that she was frightened. They had to give her a room and nurse because she would not settle. She can get aggressive if she feels threatened and she does if on her own in a strange place with strangers wanting her to do things. It`s a bit like living in a maze, two years now since it came to a head. Yesterday was just a bad day I still cannot let it all wash over me that is half the trouble. We live in different worlds..
The Attendence Allowence is much more detailed than a needs assessment. All of the things that you have mentioned count on the AA form. It contains questions like - does she need watching over to keep her safe - and if she wanders off into other rooms while you are at the doctors then the answer is yes. They also want to know if you have to remind her to wash/dress/go to the loo, if she is able to prepare a meal for herself and need help with medication. Housekeeping problems certainly count.
It is very easy to downplay someones needs when you are going through it. I would recommend that you book an appointment with Age UK to help you fill in the AA form.
Some carers have found that their PWD is more compliant with washing/dressing if there is someone "official" helping them.
It is very easy to downplay someones needs when you are going through it. I would recommend that you book an appointment with Age UK to help you fill in the AA form.
Some carers have found that their PWD is more compliant with washing/dressing if there is someone "official" helping them.
Welcome from me too, PJD. Sorry you are feeling trapped by your wife's dementia, that is sadly a familiar feeling. You should still be entitled to attendance allowance to spend on future needs, my OH had it long before it was needed to pay towards outside carers.
If the one hour respite support is not enough you should be able to go back and ask for an extra couple of hours. My OH gets 3 hours a week befriending support which lets her get out for coffee and cake and lets me get time for a really good walk.
Good luck, and keep in touch,
If the one hour respite support is not enough you should be able to go back and ask for an extra couple of hours. My OH gets 3 hours a week befriending support which lets her get out for coffee and cake and lets me get time for a really good walk.
Good luck, and keep in touch,
Hi PUD:
Welcome to TP also, you will find much useful advice on here, people are either just starting the journey, are mid way or at final stages or have completed their journey and just want to make it easier for others. So keep posting, it's an actual way of escaping the crazy, crazy world we face everyday
My husband was the same way, never took a shower or brushed his teeth etc. It was getting to the point that I didn't want to go out with him because of his odour emissions. I finally had to put my foot down and arranged for some PSW's to come and assist him. They treated him like a king, they pampered him so much he couldn't wait for them to come back. He changed from an odour releasing person to a clean, well shaven ;person that he was before. The PSW's have a patience that I don't have anymore. My husband can tell and reacts differently to them. My voice came from agitation but theirs came from patience. When you are with someone 24/7 you do need breaks. So I've been there, done that and got the t-shirt as we say here. Don't lose yourself in caregiving mode and lose yourself (like I almost did). You are a person too ,get some help for both your wife and most importantly yourself. What would happen to her if you got sick? There is help out there, you just need to ask.
Take care of yourself. Keep posting. It really does help to get things out. It's easier than you think to get unstuck.
Been absent a while as things have been difficult, my wife has been somewhat hostile recently, leaving home taking all the money, I can get lost, nothing to do: that at night when it is dark and late so I`ve been in comforting mode. Then she`ll cuddle and say she knows she`s been nasty and promptly forget. Still can`t get her to change but managed hair wash with visiting hairdresser yesterday. I`ve started the AA forms on line and hope to see Age uk when I get them complete. (What are PWD`s and PSW`s?) Went out with family last Sunday for lunch she wouldn`t eat a thing took an age to get her into the pub, then we get home and all biscuits disappear. Visited a sick friend and she claims everything in friends house is hers much as every business we visit was hers "in the beginning." I suppose the hardest bit is not having a sensible conversation for long periods of time and knowing that there is little hope of persuading her to go to day centres and also that I would be afraid to leave her in a care home for a few days because she would be frightened. What are your experiences of going on holiday? I wondered about trying it for some sunshine but not sure if that is just a step too far.
Hello, I’m a newbie too to the forum, and just finding my way round the system. My husband has early stage dementia and I’m just starting to find out what help is out there. I have the same question as PJD. What is PWD & PSW ? I’m really sorry for you PJD, I can sense your frustration and hope things can get easier for you. I’ve registered as a carer but not had an assessment as yet and also just sent off for the AA application Form. Any tips and advice will be most appreciated.
PWD is person with dementia
PSW - probably personal social worker
Welcome to the forum, I hope you find it useful. I wold say with Attendance Allowance, as wit other benefit applications, don't play down the effects of dementia or any other condition. Base you answers on the worst day, in terms of disease effects on carers and cared for.
PSW - probably personal social worker
Welcome to the forum, I hope you find it useful. I wold say with Attendance Allowance, as wit other benefit applications, don't play down the effects of dementia or any other condition. Base you answers on the worst day, in terms of disease effects on carers and cared for.
hello @Lemi
a warm welcome
https://forum.alzheimers.org.uk/threads/abbreviations-list-and-talking-point-jargon.26388/
this list of abbreviations may be useful
person with dementia is there ..... though personally I tend to simply write about a person
PSW, not sure without a context, maybe some form of social worker
fill in the AA application describing the worst day, be blunt and detailed, give examples, though it's hard to see it all written down .... AgeUK or CAB will be able to help you
a warm welcome
https://forum.alzheimers.org.uk/threads/abbreviations-list-and-talking-point-jargon.26388/
this list of abbreviations may be useful
person with dementia is there ..... though personally I tend to simply write about a person
PSW, not sure without a context, maybe some form of social worker
fill in the AA application describing the worst day, be blunt and detailed, give examples, though it's hard to see it all written down .... AgeUK or CAB will be able to help you
Hi:
Here in Canada a PSW is a Personal Support Worker. A person who aids with bathing, washing hair, shaving, getting dressed, etc. All things having to do with a persons personal health.
Here in Canada a PSW is a Personal Support Worker. A person who aids with bathing, washing hair, shaving, getting dressed, etc. All things having to do with a persons personal health.
It is hard to take when bad temper and anti social behaviour replaces the love and friendship once shared. My wife can vary from loving to dismissive in seconds we went out with daughter and grandson for Sunday lunch and she wouldn`t look at food just said the place was awful so was everyone there and she was going away and we could get lost. It is this attitude that makes me hesitate over care assessments as she won`t acknowledge the need or cooperate. On the other hand she needs bathing and underwear changes or she will catch infections. Managed today to change underwear but only because she was in pain with a nappy type rash from wearing one "Always" unchanged for a week. She will have forgotten by tomorrow and I`ll have to wait for the next painful episode to occur. This is so unlike her. She does not appear to understand what is being said. I think it is very hard to keep patience when behaviour is so odd and conversations more so. It`s getting used to it but going through the day in a parallel universe alone is tough. Keep posting.
Do you mean physically hurt? If so, no one should accept that.
My heart goes out to you. You seem to be so isolated and your doctor is no help at all. Im sorry, I dont know how the system works there to know what to suggest. Do you have things like Social Workers who might help?
I have another question. My wife has in the last couple of days begun to talk when on her own to the room. She has long animated conversations, some laughter and it goes on for as long as I am out of the room. She may then tell me what the ladies were saying. Sometimes she talks to the newspaper or TV. Is this common?
