Just need to let it all out

[wurrienot]

Dad lives alone half a mile from me. I visit 4 times a day and in reality I do everything. He has Alzheimer's and severe arthritis. His mobility is really poor so he spends most of the time sitting in his chair. I recently arranged carers to come twice a week to give me some time off and to prepare dad for my planned hospital admission later in the year. We all had cold after Christmas although dad didn't seem too bad with it, but since then he's had a few falls which is a new thing. He fell in the early hours of Tuesday morning and was taken to hospital to be checked over. He was then transferred to an assessment unit. Since being there his behaviour has become more and more aggressive, he has urinary incontinence and is refusing to eat or drink. Nothing is showing up on any tests so far but I feel that something is seriously wrong. I don't think that I could look after him at home while he is like this- to be honest, he frightened me at lunch time.
I'm not asking for answers but need to say what's in my head to people who will understand. I've been sent out of the way for an hour while the doctor sees him so I might know more about what is happening later on. Thank you for listening x

 

[SeaSwallow]

Hello @wurrienot I am so sorry to read that your dad is in hospital and hope that there is nothing too seriously wrong with him. Please keep us updated with what the doctors say.

 

[DeeCee7]

Gosh @wurrienot you have done so well to be caring for your dad 4 times a day. That’s pretty relentless so it’s good to know you have now arranged some help. Do let the staff there know that you felt afraid. Thinking of you at this worrying time.

 

[Knitandpurl]

I wonder if both the urinary incontinence and the changed more aggressive behaviour are brought on by a urinary tract infection, they play havoc with my husband. He could also be suffering from delirium. This can be brought on by falls and infections and while anyone can get it , it is more common in people with dementia. Keeping my fingers on they can sort this and it is not a new stage in his journey.

 

[Chizz]

Dad lives alone half a mile from me. I visit 4 times a day and in reality I do everything. He has Alzheimer's and severe arthritis. His mobility is really poor so he spends most of the time sitting in his chair. I recently arranged carers to come twice a week to give me some time off and to prepare dad for my planned hospital admission later in the year. We all had cold after Christmas although dad didn't seem too bad with it, but since then he's had a few falls which is a new thing. He fell in the early hours of Tuesday morning and was taken to hospital to be checked over. He was then transferred to an assessment unit. Since being there his behaviour has become more and more aggressive, he has urinary incontinence and is refusing to eat or drink. Nothing is showing up on any tests so far but I feel that something is seriously wrong. I don't think that I could look after him at home while he is like this- to be honest, he frightened me at lunch time.
I'm not asking for answers but need to say what's in my head to people who will understand. I've been sent out of the way for an hour while the doctor sees him so I might know more about what is happening later on. Thank you for listening x

Hi @wurrienot
In my limited experience (my OH has Alz's and I've been her full time carer at home for 7 years now), when a PWD goes into hospital lots of problems arise:
- it's strange surroundings for him, and that's upsetting and confusing
- there are strange people (nurses, doctor, volunteers, cleaner, catering staff, etc) trying to tell him what to do, or what not to do
In my experience, v few nurses and doctors are trained to deal with a PWD. They don't speak slow enough for the PWD to process what they're saying or asking. A PWD may not respond as expected, because they don't understand, are anxious, etc
- if he's ill with a UTI or other pain or irritation that he can't fully express then there's another cause for frustration, which turns into anger often or at least irritableness, or aggressiveness
- PWD doesn't like the strange food, or they don't drink enough and get dehydrated which can affect behaviour
-PWD may not - by choice or restrictions on the ward - move around enough and starts to get muscle wastage, or stiffness in the tendons, etc,

I'm sorry I'm telling things you already know. But when he recovers from the UTI or anything else he picks up in hospital, the hospital won't want him to leave and be discharged until a care package is in place for him, and they may feel he can't go back to living on his own. Be prepared. What do you want to happen? - have a think. Do you want/need to research local care homes?

Best wishes and a hug.

 

[wurrienot]

Thank you all for your replies X it feels good to be listened to x
The news on dad ... A lovely doctor came to talk to me about how he usually is and what changes I have noticed over the past couple of weeks and also since he was admitted to hospital. She explained that they can't find any sign of infection or serious new damage to his brain so the next thing to think about would be constipation. I told her that as I have to help dad to get off the lav, I know when he's been and that he is usually fully continent. His bladder was scanned and found to be extremely full. They now have a working theory that he is severely constipated ( what I'm seeing is liquid over spill) and that is preventing his bladder emptying. He has been sedated, had a catheter fitted and been given an enema. When I left he was asleep. I've been assured that he will probably be returning to normal by tomorrow. They have also promised that he will not be discharged until there has been a full assessment of his care needs and I have agreed to the plan of action. I feel relieved because I've been asking for this for 18 months and have constantly been told what a good job I'm doing without getting any practical advice. I'm a carer by necessity with no training, experience or resources. Dad is self funding so whenever I ask for help I just get told to sort out what I think is best. The trouble is, I don't know. I have no idea what is available, suitable or of a decent standard. I suppose this crisis could be a blessing in disguise.

 

[Kristo]

Hopefully your dad will get well soon. Make sure that you are completely honest with how much you do for him, when the assessment is being done. Think about how much you do and how much help your Dad needs with everything on his worst days, so that all of his needs are taken into account. Good luck x

 

[T1000]

So sorry to hear this, hope he can recover soon and be more settled, you have done so well it sounds super intense x

 

[Defeatedbydementia]

I feel for you and my advice would be to make sure you let them know how you will not be able to look after him yourself. We did this with mum and they put in 6wks of carers on the NHS, but we really had to keep saying we could not look after her due to distance, work, our own family life etc.
Now we pay for our own agency carers even though mum refused to have them at first.
Good luck and try to stay strong and not be fobbed off by staff who don’t know how hard it is for you xx

 

[wurrienot]

Another update... Dad is almost back to his usual (for him) self. They tried him without a catheter and he didn't pee in 24 hours so it's back in again. He's definitely not constipated now! All the aggression has gone, the swelling of his legs that I've been pointing out for the past 2 years has gone, and I can have a fairly sensible conversation with him. But, he hasn't been dressed since being admitted to hospital, he's confused about what he's doing there, and he hasn't walked further than the end of his bed for 10 days. The hospital social worker has been to see dad and has spoken to me on the phone. She is recommending that he is moved to a care home where he will undergo 6 weeks of assessment and observation which will enable them to make sensible suggestions about what is best for him long term.
I'm not sure if I should laugh or cry. It's only 3 weeks since a social worker came to the house to see us, asked a few questions, told be I was coping fine and discharged us- all based on one half hour visit. I've been begging for help from anyone I can think of as dad has become less and less mobile, has started to be incontinent and has fallen several times in the past couple of weeks which is new for him. As I'm waiting to go in hospital, I asked about respite care only to be told that as dad is self funding, I have to sort it out myself and they can't make recommendations. I did go to visit a couple of places but I don't know what I'm looking for and I don't know how to describe dad to them. Plus it takes time making appointments, getting there, looking round, reporting back to the family... And who's looking after dad while I go?
I'm hoping that this is the beginning of the support we need whether that means dad comes home or not.

 

[canary]

Fingers crossed 🤞 your dad gets the support he (and you) needs
Sometimes it takes a crisis before something happens
xx

 

[wurrienot]

This all seems to be taking forever but dad is moving to a care home on Monday. It's 20 minutes away from my house so will be easier than the hour and a quarter it takes to get to the hospital. The hospital social worker tried to get me to agree to a couple of other places - one was much too difficult to get to and another was where an acquaintance had a bad experience. In the 3 weeks since his admission, dad hasn't walked at all, has been moved from his bed to a chair using a standing frame and has been given incontinence pads to wear as well as having a catheter. I'm worried that the lack of stimulation and exercise will have had a permanent affect on dad's health. He seems so much more frail than when he was at home. I'm not sure what kind of assessment is going to be done or what will be put in place to encourage him to be independent. I'm torn between relief that the professionals are now taking an interest and fear that all the recent changes are irreversible and I'll be told that he needs full time care. Is it normal for everything to change so quickly?

 

[amIinthewrong?]

This all seems to be taking forever but dad is moving to a care home on Monday. It's 20 minutes away from my house so will be easier than the hour and a quarter it takes to get to the hospital. The hospital social worker tried to get me to agree to a couple of other places - one was much too difficult to get to and another was where an acquaintance had a bad experience. In the 3 weeks since his admission, dad hasn't walked at all, has been moved from his bed to a chair using a standing frame and has been given incontinence pads to wear as well as having a catheter. I'm worried that the lack of stimulation and exercise will have had a permanent affect on dad's health. He seems so much more frail than when he was at home. I'm not sure what kind of assessment is going to be done or what will be put in place to encourage him to be independent. I'm torn between relief that the professionals are now taking an interest and fear that all the recent changes are irreversible and I'll be told that he needs full time care. Is it normal for everything to change so quickly?

I'm sorry that this happening to you, perhaps you could express your concerns to the care home, and ask from if there is going to be any rehabilitation put in place for your father, to gain some of his mobility back. And yes things can go from 0 to 100 and back again, in the blink of an eye my mum had a stroke, and lost one side of her body and could not move that side of her one bit. Four months down the line she can move the leg that wasn't working a little,her arm on the other hand she can only move one.The thing is you can't really predict how fast someone might recover, or if they recover at all but it doesn't hurt to ask if they have physio therapists that come to the care home and see if they do that,you're dad may be willing to use their help.

 

[Chizz]

Hi @wurrienot
It probably won't come as a great surprise, but in hospital there is a shortage of staff, most kinds, and they have many many cases, so the few staff available are really really busy with the patients.
Thus, if you have an older person in hospital, the staff do not have time to spend with one patient to go to and from the toilet. It is just easier for them to write down that your dad is incontinent and say he must use a bed pan or a pad. Similarly, they haven't got time to get each patient up and dressed if they can't do it themselves. It is just easier for them to get him to sit up, put on gown, and use a hoist or a sara steady to put patient into chair for the day. Similarly, they haven't got time to feed a patient food and drink if they can't do it themselves. Similarly, they don't have enough physios to give enough regular exercise to patients. The physios are not trained in dealing with dementia patients, and if the patient cannot follow instructions or resists in dealing with an unfamiliar person.
To make it worse, if the patient has some form of dementia and can't adequately explain themselves, or answer, and are slow at doing things, or can't follow instructions, the staff do not have the training to know this or how to deal with dementia patients, and even if they did they still don't have the time to see them properly.
So, yes it is normal for a PWD who is a patient in hospital for any time gets worse - loses weight, has muscle wastage, is unhappy about sitting around in a pad, etc, etc.
That is my experience when my OH was in hospital for more than 2 weeks. Result - she forgot how to walk.
However, once placed in a care home, you may be lucky and find some improvement as the care home staff should be used to dealing with a PWD and will assist with food, drink, toileting, etc Sometimes care home will have regular physio attending, and if so the PWD may recover the walking, and muscle loss.
Chase the home for the physio to help with the independence and mobility.
Best wishes

 

[special 1]

Dad lives alone half a mile from me. I visit 4 times a day and in reality I do everything. He has Alzheimer's and severe arthritis. His mobility is really poor so he spends most of the time sitting in his chair. I recently arranged carers to come twice a week to give me some time off and to prepare dad for my planned hospital admission later in the year. We all had cold after Christmas although dad didn't seem too bad with it, but since then he's had a few falls which is a new thing. He fell in the early hours of Tuesday morning and was taken to hospital to be checked over. He was then transferred to an assessment unit. Since being there his behaviour has become more and more aggressive, he has urinary incontinence and is refusing to eat or drink. Nothing is showing up on any tests so far but I feel that something is seriously wrong. I don't think that I could look after him at home while he is like this- to be honest, he frightened me at lunch time.
I'm not asking for answers but need to say what's in my head to people who will understand. I've been sent out of the way for an hour while the doctor sees him so I might know more about what is happening later on. Thank you for listening x

 

[special 1]

Hi there. Yes we are all hear on the forum to listen to you regarding questions etc. We may not have all the answers but please make yourself heard and tell us how you are doing. Keep strong and take care. 🦋🦋🦋

 

[Grannie G]

Hello @wurrienot

Is it normal for everything to change so quickly?

It`s often the case when a person goes into residential care but hospitalisation and residential care show the condition of the person with dementia is causing concern which is why these steps are taken.

I understand how upset you are but try to take yourself back to how your dad was before he went into hospital. It is all so overwhelming for you it`s difficult to see how much your dad has changed.

See how he settles and try to enjoy your visits now he is nearer. Once he has settled and is well cared for he might rally.

Even though my husband lost his mobility in residential care he was losing it before he went. In other areas, he was much more contented and relaxed and for me, it was a blessing to be able to visit him without having the responsibility of 24/7 caring.

 

[canary]

He seems so much more frail than when he was at home.

When someone with dementia goes through what your dad has in the past few weeks they frequently do not get back to their previous level, even though they improve. Even a cold like he had can trigger progression of dementia. You may see some further improvement in the symptoms, but it may be that this is your dads "new normal". Dementia only goes one way and sometimes there are big drops.

Take comfort in that he is being well looked after and much closer than he was so that you can visit more easily