Night time Caregiver

[Crochetedcat]

My husband has been diagnosed with PSP for about 1 1/2 years, and PD before that. He is having more and more problems. He has a Foley catheter at this point and will always have it. He gets up a lot at night, and because he gets up a lot, he cannot use a nighttime collection bag, which is larger than the leg bag he uses. So, his bag needs to be emptied during the night, along with everything else. I am his caregiver. I need some sleep. Has anyone hired a caregiver for overnight? How was that experience? What does the caregiver do all night? Did you feel comfortable and sleep well with them in your home? I am in the US. Thanks.....

[Martha_k_uk]

Hi crochetedcat.

I am based in the UK so slightly different here I imagine but my dad was also very active during the night. He would be up between 5-10 times during the night, mainly for toilet visits.

My mum was caring for him at home until she couldn't manage anymore. They had carers during the day but we could not get overnight waking care for dad.

To be honest though my mum wouldn't have settled with them there anyway. I think she would have still not slept and been disturbed during the night. We begged her to try it - said we would pay for.this extra care as a family it she couldn't have coped with it.

I hope you go d something to give you much needed respite, it is so exhausting.

Thinking of you x

[Hidden]

Sorry I can't help with the catheter problem,only thing I would do is cut out fluids at a certain time.psp persons are prone to wanting to go to the bathroom and it does go on and on and usually nothing is produced. Someone else will chime in and maybe have some answers for you.Other then a very healthy glass of wine for sleep,I got nothing.

Welcome

Dee in BC

[raincitygirl in reply to Hidden]

You're funny

[NannaB]

I’m in the U.K. so it is different but when my husband was still walking and getting up in the night, often urinating on the way to the bathroom rather than use a bottle, we had night carers who had to stay awake. To start wth I would put him to bed and get him up in the morning but after about a year, the night carer, with my help, got him undressed and into bed and again with my help, got him up, showered and dressed. They would escort him to the bathroom in the night or hold a bottle for him and once he had a convene with a bag, would empty it when necessary. Once the night carer came I slept about 5-6 hours a night without waking and that got me through the day. I never had daytime help.

As I’m in the U.K. I never had to pay and it would have been horrendous financing it myself but if you can, it’s certainly well worth getting a night carer. We had one for 40 hours a week and she became part of the family. I still see her regularly. My husband loved her as she was so good with him. Another did 20 hours.

I do hope you get all the help you need.

[Sarah1972]

I would strongly recommend it. There is only so much one can take and when you are not getting rest it becomes almost unbearable and impossible to function.

My dad was my mums carer through the night and day and once I finished work I would take over. Unfortunately this made dad ill and ended up in hospital for two weeks. Exhausted, dehydrated and water infection. Since dad went into hospital mums anxiety grew and with it came restless nights. I would be up anywhere from 4-12 times a night. After about 6 weeks I went to the dr and Mum was prescribed oxbutynin which relaxes the bladder so they don’t need the toilet as often. So far this has been a god send and though she still wakes me as she has an itch or uncomfortable she only uses the commode 3 times in the night. Which was a huge help

After 12 weeks things were really getting on top of me, I was unable to go back to work to a job I worked hard for and loved, dad was back in hospital and mums falls were becoming more frequent. I started to resent her.

Mum n dad moved 200 miles to live near me so they had someone on hand to help. Anyway the bungalow fell through and we all ended up renting a bungalow together. When they moved I always made it clear that when the time came to have carers we would get them as I wanted to remain her daughter and not carer. I also have my own family who need me.

Anyway long story short, I never realised how fast Mum would deteriorate or how expensive carers would be.

Last Saturday I almost hit breaking point, crying most of the day and getting angry trying to work out how I could carry on. I eventually buckled and got a carer in for the night. This was against my fathers wishes as he has made it very clear that she would not have carers and it would be over his dead body! Thankfully being in hospital he didn’t have a choice.

The carer was fantastic, Mum was fine so I paid for another 2 nights, though when she found out how much it cost me she was annoyed that she didn’t get up more

I on the other hand feel it was the best money I ever spent as it bought me back my sanity.

Dad was not impressed however he had to lump it 😳

If you can get someone in then do it. Don’t do what I did.

Good luck to you xx

[Crochetedcat]

Thanks for your comments. Last night was a bad night, up three times, and then a bowel accident at 5:15 am. My husband has a catheter, which helps with bathroom trips, but his bag needs to be emptied during the night. He also cannot get up from his bed, a seat, etc at any time. He still uses a walker, but shuffles when he walks. I am calling careers today.... My husband is also being set up for palliative care, which Medicare covers. They provide a RN once a week, PT, speech therapy, and an aide up to three times a week for an hour at a time. No overnight.

[enjoysalud]

My 55 year old son died of PSP May 4, 2017.

He had his own home and I had mine. We live(d) in the San Fernando Valley of Los Angeles. I had a paid caretaker for him during the week (I would go over each day for several hours) and was the sole caretaker Friday thro Sunday nite.

When my son was unable to walk, confined to bed, and I was unable to move him, I hired a NIGHT caretaker. She was excellent.

My son did not have Long Term Care (LTC). Here, at night, it's for 12 hour shifts......I hired one from 6pm to 6am. The cost for that one shift was approximately $550.

Different parts of the country (USA) have different rates. If you do NOT have LTC, call a home care agency and inquire as to the cost.

Good luck!