JulieKac Asked June 2021
What do you do when you feel the person you are caring for is driving you out of your mind?
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My father is 92 , getting very frail (partly due to never getting out of his chair) and consequently has serious mobility issues. He also has quite an inflamed bottom which sometimes breaks out.
He constantly moans ‘oh dear’ and ‘oh no’ and also wakes me all through the night (often when I go to check him he’s already asleep)
I am stuck with him mostly 24/7 apart from a 30 minute carer visit.
I am sure you can imagine what a negative environment it is to constantly be around and hear this all day long.
Any suggestions?
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In my experience with my mom if she is tested during the course of antibiotic therapy or less than 7 days after the antibiotics her culture is usually negative. I know she is brewing another one so I have her retested the following week and surely it was another UTI and placed on another antibiotic. Sometimes it may take another course or two. Also my moms electrolytes may be off which she has been confused and disoriented. Bladder pain and confusion in my moms case is one of her main issues with UTI'S. My mothers urologist on rare occasion will start her on one before the cultures comes back if she has more serious symptoms. The ER does it as well.
I hope things get settled for your father soon.
His urine seems clear at the moment and the doctor says it is normal so there is no follow up.
He is settled but getting him to drink is my daily challenge.
Thanks for your useful advice.
From what you're saying here about your father and his condition, 30 minutes once a day from a carer is not adequate.
There's 24 hours in a day. Who helps your father with his hygiene care when the carer isn't there?
His 'bottom' wouldn't be inflamed if he was being properly and frequently tended to throughout the day. More than what a carer can do in a half hour visit.
Your father needs to see a doctor. They can give you medicine to help him.
Often when a person's hygiene isn't great and they mostly sit or are in bed bed skin fungus can develop. It's inflamed, feels hot and looks like a very bad sunburn. It can be helped by seeing to it that the person is thoroughly washed daily and medicated powder or cream applied to them.
Your father is very frail. He should be in bed when the carer arrives and washed head-to-toe every single day if he cannot be showered. If he's incontinent and using diapers not only does he need to be changed several times a day, but also washed and a barrier cream applied every time the same as would be put on a baby. I used to use baby diaper cream on my clients all the time. It works the same for an adult as it does for an infant.
Skin breakdown can be prevented and if not prevented entirely than minimalized and managed.
Take your father to the doctor. He may need a prescription cream or medicated powder.
During the day and at night he uses a urine bottle.
I get him up in the morning and he has his breakfast, after which the carer comes.The carer washes him from head to toe every day and applies barrier cream.
I have asked the nurse to visit to check on his bottom and see if she can advise on how to minimize skin breakdown.
Do you have any siblings?
When they did the reassessment, did they speak to both of you or only to him?
"Risk of carer breakdown" is one factor which appears on our round information as a reason for our visiting clients, and I happen to know that your NHS Trust and your local authority do have crisis support teams (because they're currently advertising the same job that I do in a different county). Demand is high and resources are scarce, but when did you last have any contact with anyone in adult social care? - because it's reasonable for you to push for more respite hours or a respite break, and it's reasonable to keep asking. What do they actually do in that half hour visit at the moment?
One caveat, though - things are bedlam out there, even very dependent families are being let down to the extent that I just don't understand what is going on. People are leaving our service, but they're also leaving a lot of the private providers locally; and if the agencies and the local authorities simply don't have the workforce then they can't send the carers. It's all going a bit pear-shaped.
Have you joined CarersUK? They'll certainly have a support group in your area.
PS Are the District Nurses visiting to check his skin?
If his skin gets broken at all, the carer requests a visit from the district nurse. At the moment I think it’s borderline.
I’m not sure if I am a member of CarersUK. Will Check that out.
So you think I should be pushing to try and get some respite? Talking to East Sussex social services, I got the impression that unless they think you are having a breakdown, there is not much hope of support. How do you suggest I go about this?
https://www.brighton-hove.gov.uk/adult-social-care/care-and-support-adults/support-carers
Have you at least had a carer's assessment?
Yes, I know that website. There’s not much there that helps my situation though. Actually we come under East Sussex social care and they have a similar site.
I have got a Carers Card so I get 20% off bus travel.
The carried out a Carer’s Assessment over the phone.
After this they said they could give me a one-off payment of £250 for my mental health needs! They said that due to COVID and cutbacks on social care, they couldn’t offer me any other support.
I think you're living on the South Coast, aren't you? - have I got that right? I remember your posting quite some time back.
The carers who come for the half hour visit were initiated by social services via Alina Healthcare after my Father came out of hospital several years ago. They used to come three times a week but at that time he was managing to wash and dress himself. According to their assessment that’s all the care we/he needs and actually he pays the total cost himself. There is a cap of £500 per month after which they would pay, but after completing a lengthy re-assessment (by phone due to COVID) they decided that 30 minutes daily care was sufficient. The 30 min care plan is to wash and dress him. Obviously, if I wasn’t here, he would need a lot more care. The only thing he can do for himself is (just about) get to the toilet and back with a zimmerframe and. at night he has a commode. His mobility is very poor and he is reluctant to move around for fear of falling.
Yes, I am on the south coast near Brighton.
So glad he is doing better. I usually get my mom retested after a round of antibiotics 7 days after finishing antibiotics. We try to keep on top of things.
I really appreciate it 🙏🏼
I will contact the doctor again on Monday and ask to get him retested ( he should have got back to me with the results of the first sample really.) He is eating quite well and has been drinking liquids (albeit with a bit of complaining) so that’s good. No nausea, vomiting or pain.
He was in hospital last year with a very bad UTI ( admitted for shortness of breath, but actually it was a UTI and prostate problem.)
That time he became quite delirious and was much worse so I am hoping we caught the UTI earlier.
I would get him retested. On occasion doctors may give an antibiotic without waiting for the results but usually is rare these days.
The doctor phoned my Father 10 minutes after I left the surgery and said he had a UTI and was sending over a prescription. So, does it mean it was randomly prescribed? Tomorrow will be the last day of a five day course of Trimethoprim.
At the moment there is not much I can do to make things easier. I cannot go back to Turkey right now anyway. My husband understands the situation but of course it’s difficult. He isn’t as isolated as me and he always says ‘he’s your Dad, you have to keep going.’ Although I realise that, nobody really understands what it is like to be around someone almost 24/7. Yes, I can get out for a few hours but I always have him at the back of my mind ( ie Did he drink/eat anything etc?) At the moment with a UTI he should be drinking a lot more to flush the infection away but I am constantly like the bad cop reminding him to drink more water, tea, anything!!!
At the moment there is not much I can do to make things easier. I cannot go back to Turkey right now anyway. My husband understands the situation but of course it’s difficult. He isn’t as isolated as me and he always says ‘he’s your Dad, you have to keep going.’ Although I realise that, nobody really understands what it is like to be around someone almost 24/7. Yes, I can get out for a few hours but I always have him at the back of my mind ( ie Did he drink/eat anything etc?) At the moment with a UTI he should be drinking a lot more to flush the infection away but I am constantly like the bad cop reminding him to drink more water, tea, anything!!!
Is your father being treated with antibiotics for the UTI? My mother gets them frequently and sometimes the medication does not work and she still has symptoms. The urologist repeats her culture and places her on another she is sensitive to which usually clears the infection.
What did the nurse suggest in preventing breakdown? Did they recommend a wound specialist? Ulcers can happen very quicky and are difficult to heal. I would also speak to his doctor to order a consult with a wound specialist. He should not be sitting in his chair all day. Too much pressure on his butt and coccyx.
I understand completely what it is like to be around someone 24/7. I have been caring for my mother for 22 years. Caregiving is not for everyone and that is ok. There must be Elder services in your country that can assist you with planning.
Did your father see a doctor for his depression? He might need an antidepressant. If he has not seen someone, I would make an appointment asap.
My mother moans sometimes and it is usually for a good reason, a UTI, pain or she needs changing. I would investigate further about his moaning. Mention it to his doctor. The best to you and your father. Hope you find a good solution soon. Take care.
The pressure sores are already being monitored by the carer and if the skin breaks we contact the nurse to check him. He has a pressure mattress on his bed and special cushion on his chair.
How is he waking you up in the night?
Have you asked him to stop with the constant moaning? Yikes. That'd drive me batty! Put on some ear phones and have nice music playing to drown out some of the excess noise but low enough you can hear things you should hear.
Can you put some distance between the two of you in the home so you can't hear him belly aching all day?
Is he on pain and not being properly medicated for it or is the moaning just a bad habit?
Also due to COVID getting my Father into a care home for respite care for a couple of weeks isn’t possible either.
You asked how he is waking me up in the night. He shouts out and moans a lot and when I check him he has usually gone back to sleep or he has just been moaning after getting up to use the commode next to his bed. He is quite deaf so doesn’t realise how loud and disturbing he is to me.
Yes, you are right, it is driving me batty. I can sit in my room to reduce hearing the constant ‘oh dears’ but it’s still there!!!🤪
Your dad needs 24/7 care. You are exhausted! How long do you feel that you can maintain this situation. Obviously, you feel responsible for your dad and care deeply but it does seem to be a burden for you. It’s a huge responsibility to care for an elderly parent.
Many of us on this forum are currently caregivers or have cared for our family members that are now deceased.
Have you discussed this situation with your father? Is he willing to enter a care home? Or at least hire more help at his home so you can rest?
How does your husband feel about this situation? You must miss each other terribly.
I am so sorry that you are struggling with this situation. I hope that you find a viable solution soon. Wishing you peace as you navigate your way through this difficult time in your life.