PSP and living alone

[Daughter-in-law]

Hi, just joined. My mother-in-law has recently been diagnosed with PSP. She is a widower and lives alone, we are awaiting social services assessment but for the last month my husband and brother-in-law have been with her more or less 24/7. My concern is that she is at risk of falling at all times but it is not sustainable for her sons to be there all the time, my husband has been off work but is starting a new job in a few weeks. Does anyone else have a relative with PSP who lives alone? Has anyone arranged live in carers? Physio have said she is high risk for falling but she is also very stubborn and doesn't follow instructions for her safety, she also wants to continue living in her own home. We live 40min away so not quite on the doorstep. Any advice or experience greatly welcomed!

[easterncedar]

Hi, there. I'm sorry about your mother-in-law. I am guessing you are in the UK, so am sure someone on your side of the Atlantic will be able to point you to the services that are available. There really is no way for a person with PSP to live safely alone. The stubbornness and inability to remember and follow instructions and to learn to self-protect are part of the disease. I would try to get care in for now; and try to plan for a future on her behalf. One thing is certain with PSP: whatever the current situation is, it will change. If she is at all capable of making decisions now, it might be in her best interest to try to get her to look down the road and to get her affairs in order and to choose a care home of some kind. It may not be needed for years (you might say), but for someday... Good luck to you and your family.

[myjual7]

I live alone with Psp have assessment Friday for chc ready for the nursing home. I'm ready for it now and don't want my daughters to suffer anymore.

[CM2015]

Hello,

My mum also lives alone with PSP however I do live opposite. She wants to stay in her home as long as possible too so we have tried to make her apartment as safe and mobility friendly as we can. We have a fantastic OT and have just taken on some Carers to come in for half an hour in the morning and then again in the evening. It's all about damage limitation, the more that you can help them avoid tasks/chores that can lead to a fall the better. We also have a volunteer that comes in and helps with ironing/shopping and a cleaner too. It's difficult because you are basically taking everything away from them but if it means they don't go in a home .... Mum also has an emergency button that she wears around her neck which we got from Saga. If you can get a good Occupational Therapist on board I think life will improve for all of you.

Are you in the uk? I'm in the SouthEast.

Ask me anything...I have had to learn along the way but our situations sound similar and I'm sure we can get there together.

Carrie

[cabbagecottage in reply to CM2015]

Most important th very best OT u can get

[Amilazy]

This will not be easy. Without live in care she will be at high risk of dangerous falls, which could cause her NHS / Social Services to risk assess her. In the past they would have moved her to a place of safety usually a care home but they do not like to do this now, so will probably provide a number carer visits through the day to ensure she is safe during the day, but the problem will be when she start losing swallow function which cause chokes while at the same time PSP will rob her of logic of realising she needs to press her alarm. She is independent but needs to realise she will need a nursing home in the future hopefully a long time but while she can it may be worth checking out some to find one she may like, I suggest with a member of the family.

Best wishes Tim

[Kelly55]

Sorry to hear about the diagnosis, I'd say someone with symptomatic PSP cannot live alone but it depends how far her symptoms are and how they are displaying. My mum lived alone with visits until she fell and fractured two vertebrae. At this point I moved in and have been a full time carer. This is not an option for everyone so id say get OT, CHC etc involved ASAP and push for as much support as possible as soon as possible. Talk worst case scenarios to all involved and an important point is she is not being stubborn! A symptom of PSP is lack of rush awareness, they cannot comprehend why what used to be normal actions are no longer possible. So will try to do things and will get hurt. This is frustrating for all involved but needs to emphasised when discussing care! Mum is now entitled to pretty much 24/7 care in her home (she has no assets or savings so can get social funding) although I'm currently still doing the bulk of day hours, but I'd get the ball rolling ASAP. Better safe than sorry! X

[abirke]

I have read and liked eveyones comments! Everyone is correct. Your mum may be at the beginning stages; it may look like she can handle it; and then she falls and breaks her vertebra, or any other bone as was stated in a previous post!

I had to quit my teaching job. I thought "well I'll just go for substitute a couple days a week" that did not work out either. Now I stay home with my husband Bruce, 24/7 He was diagnosed 3 years ago and within that time he has lost his ability to drive , write, see fully, walk and or stand alone, swallow, eat without a PEG tube.

I walk with him EVERYWHERE; I feed him, shower him , make sure he is safe and comfortable.....

I am sorry to give you such harsh news but I also want you to have this talk with your mum. Though she will be cognizant , problem solving becomes limited.

I am sorry my darling I am crying and feel guilty giving you such harsh news but I'm as worried for your mum's safety as I am guilty feeling .

The "good" news is that the UK seems to have a good health care system; and YOU will discover ways to help your mum you never knew you had in you. You and your family will find a way to make it work. Stay positive; be creative; stay healthy; be good to yourself....And help mum understand the importance of living with those who can help her 24/7. And if you are a spiritual person, call on your Maker for guidance and strength; you are not alone He is there for you. We are hear for you .... If you need help, information or to have a tantrum......welcome ....

AVB

The Lord is my rock, and my fortress and my deliverer; my God my strength, in whom I will trust; mu buckler and the horn of my salvation, and my high tower.

Psalm 18:2

I can do all things through Christ which strengthens me.

Philippians 4:13

[steph02]

IT is unbelievable the way the carers want to shove us all in homes. If she has been living by herself without any major incident then let her be, I happen to live with my wife although a fall about once or twice a day ( usually controlled ) There is no way I would go into a home. I do not consider myself an invalid at the moment.

[skii]

My father lives alone and has psp. We to worry about his falling. A relief measure we took for him and us is that we installed cameras and can log in and check on him. He knows if he fall he won't lay long till one off checks on him and helps us to know he's ok

[skii]

Dlink cameras easy to install and cheap

[Makua]

I am sorry for your situation. Unfortunately, "it takes a village to care for the elderly". In my situation my wife got sick and later diagnosed with Psp six months after my retirement. So from Dec 2015 until Nov 2019 I was her full time caregiver 7x24. I had next to nothing help which was my choosing. I do no recommend that approach as it almost took me out. Hopefully all your family can come up with a plan that includes hired caregivers along with family support. It will not be easy, but if everyone shares the support it will be less stressful. I hope this helps.

[Daveb1]

Hi,I live alone with progressing PSP, but have arranged safe mobility inside my house, and use an electric wheelchair to take my dogs out to play. I think the key is to address/prevent her denial. She'll be much easier to care for if she accepts her limitations.