Its been a long time since I have been here, I am sorry about that. I have just been in headless chicken mode.
My most lovely Mother is in the advanced stages of CBD. She cannot move, communicates mainly with her eyes, has great difficulty swallowing, has skin pressure sores, double incontinence etc..but still has mental capacity which is the most heart breaking aspect of all of this.
We are trying desperately to keep her at home but I think we are moving to a nursing home setting because of her double incontinence. When the carers are not there we have to deal with her faecal incontinence and this is so awful.
I never thought I would be mopping up my Mothers poo, sorting her nappy and cleaning and wiping her bottom. I keep wrestling with my conscience. Should I keep doing this so my Mother stays at home with my Father, they have been married for 60 years. I have a family and working life of my own.
I think I have lost sight of reality which is why I am posting..
I would very much appreciate any useful advice. I am looking at a nursing home on Wednesday as I am at my wits end..
Oh by the way my Mother still doesn't qualify for CHC!
My wife (CBD) lived at home right to the end. She also was doubly incontinent. Carers looked after that side of things. From day one incontinence pads were supplied. District nurses visited every day. Palliative care nurses joined them for the last couple of weeks. My wife wanted to be at home and her wishes were met. We had CHC from early on and got really good help throughout. I feel really sorry for you and the many others who struggle to get properly funded care. Why is it such a postcode lottery? It just isn't fair. All I can do is pray.
This is something you and your family have to decide, we can only offer our experiences.
My wife and I cared for Dad, CBD, at our home for 3 years. It started out as more assisted help but eventually became 100% care. I was the primary caregiver and my wife helped as she could. I recall doing everything you stated many, many times. Dad was able to communicate for most the time and our relationship shifted from father and son to patient and caregiver. We had our share of disagreements and it came to a head one day when his VA doctor was present. The doctor got his team together the next day at the house and it was decided the best thing to do was transition to a nursing home. I still was active in his care and making sure things got done for him but I was no longer the primary caregiver and our relationship went back to more of a father and son. Dad lived in the nursing home for about a year with me and/or my wife seeing him every other day. It also helped with our marriage since we could become more "spontaneous" again since not everything was planned to assure dad had proper care 24/7.
Only you know what is right for you and your Mum and wider family. Moving into a nursing home is a big step but sometimes necessary. I am hoping to keep my Mum at home but I also remember what she said to me in the early days of PSP, that she had had her life and she didn't want me to do anything to jeopardise my relationship with my husband as we still have our lives to live (luckily he is salt of the earth and really supports me looking after Mum, so it has never been an issue).
Have you got POA for Health, think it is important you have this especially if following nursing home route, otherwise you could lose control of how your mum is treated and what interventions maybe made at a later date.
Have you been in touch with the PSPA and asked them for support with CHC funding, or can you get the Neurologist to write supporting a funding request? We are incredibly lucky and Mum's Community Matron & GP were both very supportive to our funding request. If you can get your GP to raise a DS1500 form I think that will automatically trigger funding as it is saying that the patient has a terminal illness & is not expected to live beyond 6 months, doesn't mean they won't and with PSP nobody really knows & because of this doctors can be reluctant to raise one.
Funny the things that upset each of us isn't it, I have got quite blase about pooh, but still find it really hard feeding Mum and watching her struggle so.
I fully understand this red line. I never thought I would be able to cope with double incontenance, , thankfully/unfortunately my husband was constantly constipated, which caused other problems, but I was able to keep him at home until the end.
As to when is the right time for a nursing home, when you feel your Mum would be safer with more experienced people looking after her. I know one think I would hate, is my daughter having to clean up after me and she is a nurse, there is something about a uniform that makes certain things bearable.
One thing, is your Mum fitted with a catheter? 1. It would help you enormously. 2. Make her feel so much more comfortable. 3. District nurses have to be involved, may help with CHC! Just a thought.
Placing a loved one in a skilled care home is a very personal family decision. A year ago tomorrow, we placed my father in Nursing Home due to inability to continue to give the care needed at home. The NH has the equipment and staff to handle his needs. My mother is with may father every day to feed him lunch and then stays till myself or one of my siblings arrives to feed him dinner, we stay till he goes to bed. Although we continue to care for dad, we are not the primary care givers, we mostly over see his needs are met. This was the best thing for our family, mainly for my mom health, caring for dad everyday, even with home health and us coming over, was wearing her out.
Good morning Martina12 I am in the same boat, we moved with are daughter and son in law two years ago, my husband has Multiple Symptoms Atrophy it’s been thirteen years now I’m so burnt out I am talking to my girls so they know, I think it’s time. He has a permanent catheter. He gos from the recliner to his wheelchair and that’s it, dose not talk much eats very little. It’s not an easy discussion but it has to be done. God bless you. You are not alone
Sometimes the most loving thing to do is turn to professionals to help.
The nursing home decision was a turning point for me saving what was left of my life.
I believe mothers want what is best for their children.
Your visits with your mother will be of high quality.
Thank you all for your advice and comments. I really appreciate them. I visited the nursing home and was told that my Mums needs were so high that they didn't have the staffing capacity to look after her. So Mum is at home for the time being until we can find something else...the only other nursing home in the area had a dreadful report using words like 'unsafe' so that is not an option.
My mother had Alzheimer's, a pretty serious disease. It is difficult for the loved ones of a sick person. It was hard for me to see how my mother lost her sanity every day, bit by bit. She would say, "Wow, that's Trump. I was at water polo with him last Friday." And I didn't know what to tell her because she'd never met the president and never played polo. I found this article on thekey.com/learning-center/... to help me understand the intricacies of communicating with with people with alzheimer's. It allowed me to see a smile on my mother's face once in a while.
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