I have posted a few times with my woes and appreciate the support. I think I have almost made the decision to have Mum home with me. Almost 1 year in nursing home followed by assisted living ( 6 months in each). I know Mum wants be with me and I feel I owe to her for endless motherly love plus I feel her end years should be not in an institution. I know it will be hard but I will have help from carers and PAs. Anybody have some experience of taking this step? Mum was in her own home until abondoned by my step Dad a year ago. Looking for experience of this in the UK
Mum currently has much support from family and SS which will continue. Look forward to replies x
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eurolynch
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My experience was in the USA with my son. I have no regrets, but do wonder if having a variety of caretakers each day (as one has in a nursing home) would have served my son better. His wish was to be in his own home, and he received that wish.
In the USA we are hampered by medical services being what you are ABLE to pay for.....limits a great deal.
One main issue for me is Mum loves me the most in the world. The care she has is good but not me. So simple and trivial after 6 months Mum is still given milky coffee. Has always taken it almost black. Little things x
If you can get the support you need I am sure your mom would rather be at home. Being her caregiver will become a 24/7 job so make sure you get some breaks. A burned out caregiver is of no use to anyone.
I have no regrets at looking after mum at home for her lasts two years, but make sure you have a plan in place so that you can get a REGULAR breaks. We did get continuing care for the last six months.
In our case we preferred to take care of my wife at home. We believe that the family environment is more enriching.
This month 7 years ago since the first specific PSP symptom.
It is a difficult decision.
It is necessary an emotional, economic and sufficient time available, in addition to having a primary caregiver prepared to manage the necessary staff to care for the patient, take care of the house and everything that surrounds it, as well as managing the different symptoms that are going to go producing with the progression of the disease.
The adaptation of the house to adequately care for the sick person is very important.
These are our experiences:
* Releasing the PSP caregiver and allowing him / her to have a life outside the home as well as to avoid strong or continuous physical and psychological efforts is fundamental. The main caregiver of a PSP patient is progressively taking on additional tasks. To the person's previous work (before the disease had been shown) must be added to the work formerly done by the PSP patient, plus the management of the illness and the guidance and surveillance of people who form the help team. A special and continuous attention must be directed to the main caregiver and his / her medical history.
Remember that the main caregiver jobs and occupations grow along with age. Without significant help it is very difficult to carry out all these activities without suffering a severe wear-down.
Rest and sleep well is essential. Combat stress, too.
From my experience and also from my group of caregivers, it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregivers, far away from the PSP problems. At least ten days of holiday each six months are essential.
As Bill F (Smart Patients) said: "As we look back on where we are, we have a wonderful support team of medical professionals, fitness trainers, church folks, nonprofit groups, friends / neighbors, paid caregivers, family members. It's absolutely amazing. Start now to build your team. You will need them, and they'll all want to help. "
As say JEN2017 "nobody could / should go through this hard disease alone. Especially the caregiver ".
Reproducing the phrase of Anne Heady (active participant in PSP-HealthUnlocked): "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
Dear eurolynch I made the decision to care for my wife at home until she passes for love and loyalty. It is the hardest thing I have ever done and it will get harder until she is released from this terrible disease. If you have support from carers, friends and family then it is also the most rewarding thing you can do. Your mum will change. Remember it is the disease, not her. Try to keep your lives as normal as possible. You will get angry, frustrated and tired. That is when a good rant on this forum helps. Good luck. Rob
You've captured your thoughts so well, Rob, in your response to eurolynch, and I couldn't agree with you more, as have the other responses. I too would have had it no other way but to care for my wonderful husband of 46 years, returning his unconditional love. Boy, was it hard and looking back I have no idea how I did it. There were many rewarding moments amongst the huge challenges but I think the most rewarding moments I have are now that he is gone, looking back with no regrets that I did everything in my power to make his life just a little bit better. Would I do it again, absolutely! Moving forward without him is, in many respects, so much harder than the caring but PSP gave me a strength I didn't know I had and I hope to build on that strength in the coming days and months. Best wishes to you and your wife as you negotiate the ups and downs of coping. Hils.
I would recommend getting advice both from the nursing home and anyone else who knows your Mums needs well. Are you getting CHC? The CHC nurse should give you good advice if they know her.
Usually someone doesn't go into a nursing home until there are clinical needs which put them beyond an ordinary care home. Caring from someone with that level of need requires a lot of well organised home support. If that is the case for your Mum.
My experience was that carers coming in four times a day lifted the care burden enormously, but there was a lot of care I still had to do to fill in the gaps in between. I hung on too long, keeping my Liz at home way past the time she needed to be in a Nursing Home. I lived a life of, "get up start caring" with little else as I was too exhausted.
Can you bring your Mum home for day visits to try it out?
Would day visits home give her what she needs and still have the level of care provided by the home?
I felt very guilty that my wife was in a nursing home and eventually unable to come home for an afternoon. That diminished as I began to realise that we just could not get the level of care she needed were she to be at home.
It sounds like you have a difficult decision to make.
My wife died peacefully and painlessly at home of PSP (which must be the most cruel disease ever) 3 months ago. She was incredibly strong and determined and never lost her sense of humour and never complained once.
She had PSP for 7 years before accurate diagnosis and then lived on for a further 8 years before it finally let her go. My wife pleaded to stay at home and made an advance decision that she did not want to go to hospital for any treatment.
After diagnosis I sought advice as to whether staying at home was feasible with PSP and was told theoretically yes but in practice we were unlikely to get and retain the level of care that she will require. We achieved her wishes but I have to tell you it was not easy and there were 3 fundamentals required .
Firstly communication became very difficult very quickly. My first "live in carer" recognised this immediately and we tried hard to get the care company to provide continuity of carer. In the UK this proved impossible and every few weeks a different carer was provided so we had to start from scratch again and I started to understand the advice that I had been given re care at the start.It is not the supply of good carers that is the problem it is retaining the same carers. It was absolutely essential to have continuity of carer as it was vital to have carers so experienced in my wife's needs that they could anticipate them. In spite of the care companies, with considerable help of that first carer we formed a team of 4 permanent live in carers who worked 5 weeK shifts (2 living in at a time) and a 5th hourly carer covering their breaks. The unwritten rule was that their holidays had to be taken when they were not on shift. It worked but the care industry will not provide this easily in the UK so you have to persuade the individual carers and it is only held together by goodwill as they will not be bound to this by their contracts with the care companies who employ them.
As you will guess from the above a team of 5 carers does not come cheap and this is a long illness. In addition as it progresses lots of equipment is required (e.g wheel chair lift, wet rooms, hoists etc etc ). In the uk you might get some help but it is variable and costs of keeping someone at home will be several times the cost of a care home.
Lastly, keeping someone with PSP at home is incredibly hard and stressful and for a long time. It is probably sensible to consider that there is a risk that it could well impact on your own health or future health no matter how strong you think you are.
Having said all this,now that it is over, I am so glad we were lucky enough to be able to do it. My wife laughed every day of this dreadful illness and I now sleep at night knowing that we could not have done more for her than we did. I am just so grateful to those 5 carers who proved that with goodwill it was possible to get the level of care that proved the earlier advice I was given to be wrong.
I think there is a difference between a spouse caring for a loved one with PSP/CBD and the children of that loved one. I cared for my wife becasue of my love for her and the commitment I made when I married her. I know I didnt fully understand that commitment when I married, but do now. She passed away in June 2018.
While caring for a loved one with CBD/PSP at home is best(spouse or parent), I think there comes a point because of the level of care required, where the children of that loved one would need to seek a care home. I know if I needed that level of care, I would not want my kids to stop their lives to provide it to me. They have their lives and their families.
I believe that at some point(deciding that point is the hardest decision), you should seek care outside your home. It sounds like that that time is now for you.
Hi Bobby, just read your post and it really hit home. I very much appreciate what you said about the difference between a spouse watching a wife and a children watch a parent. My dad has watch mom the three years she was diagnosed with psp and it has become too much for him. He is 76. I have since taken on the roll to care for my mom as I did not want to put her in a nursing him. She has some dementia but still understand what’s going on around her. She does need her meals brought to her and spends most if not all her time in bed. She needs assistance going to and from the bathroom and has a hard time mentally dealing with this awful illness and suffers from sever depression and anxiety. I have a 4 year old and a 7 year old and I’m constantly juggling It is hard. I love my mother and feel that it’s mt duty to do this but feel toren as I have my own family and my own health. I have applied for her to get into a nursing home but I will care for her until then. But I feel guilt. So much guilt in all aspects of my life. I just wanted to say Thank you for understanding and truly being an advocate for us kids who are caring for our parents. My GOD keep you safe and bless you. You have been the ultimate husband and I hope that one day my husband will do the same for me if I end up in that condition. I now know that this is not ever something I would want my kids to do for me. Thank you again. Be well, Bobby.
Your post highlights why I despise this cruel disease. Not only does it take cognitive and physical abilities and causes anxiety in those ones we love with the disease, but it also causes guilt, second guessing, heartache, and compromised health of the family and friends of the patient. My heart aches for you as well as my kids as they watch their beloved parent decline on a monthly basis and have to make painful choices with the fear in the back of their minds of their risk of the disease in their lives (even though the doctors down play the genetic aspect).
Each of us have our unique circumstances in which we have to deal with the disease. My wife and I were in our 50s when we had to deal with this disease. I was physically able to do so and was blessed with a job where I could financially retire early to care for her. I really dont know how caregivers that are in their 70s+, women caring for husbands, or those who need to maintain a level of income are able to deal with the physically, emotionally, and mentally demanding needs of being a caregiver. I only wish I we had been older, only to have had more time with her.
This forum has blessed me immensely. There are lovely people here who are wise, caring and supportive to help each other through those physically, emotionally, and mentally demanding times.
I wish you strength and wisdom. Avoid guilt by making decisions based on your priorities and dont look back. Guilt has no redeeming value. There is no perfect solution.
I cared for Chris at home throughout. He was 84 when he died and I was 80.
I am lucky to have good health and managed.
I know I wouldn't want my children to give up so much of their life for me. I was glad to do it for him but it's a different situation. I wouldn't want the grand children to lose because of my needs.
It's incredibly demanding emotionally, physically and practically.
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