I can no longer keep my hubby safe at home. He is having dangerous falls 4, 5 times each day. He can't seem to shut off his mind, he gets a notion to do something and attempts to tackle whatever it may be. ends up hitting the floor...hard. I try to get him to use the wheel chair, but he really doesn't like to (stubborn man) Homecare comes in for short periods, once in the morning and once after noon. i'm at work when they come, so he spends much time alone. When he falls, he cannot get up on his own, he is like lifting dead weight. I am not strong enough to do this day after day, my back is killing me. I'm so worried he will end up with broken bones, or a brain injury or worse. We applied to have him move into the facility where he has done several respite visits. They accepted him, all we had to do was attend the pre-admission meeting. Day before the meeting, they cancelled and decided they were not going to take him. Hard enough having to make that decision, then accepting it, thinking everything was going to be fine, then...BANG!! change of plans. I can't leave him at home like this, so I'm scrambling trying to figure out what to do next. We live in a fairly small community, there is the facility that turned us away, one facility that is for far more independant people, or the continuing care facility at the hospital (we were told there are no vacancies there). So they may ship him to another community until something comes available. Not very convienient. Just wish something could be simple and straight forward.
joan
Written by
laroux
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Knowing that every patient and every locale is different, I will still tell you our story. I worked in hospice for many years and we always found that personal care in a home was preferable to a nursing home or other institution. By asking different churches where there members have gone when there was a need, we found the place where my husband is now. It is not only less expensive, it is homelike and he is included in anything he wishes to be. Ask your friends and acquaintances. Ask Social Workers. Word of mouth will be how you find these places. Even your local hospice may have a lead. Good luck.
Dear Joan, Why did care facility decline to take your husband? have they put details in writing to you (yet)? Is he/you still able to use facility for respite?
I certainly feel for you - its a real dilemma what is best v's what is possible / feasible - ..
It all boils down to him being too much work. They are not equipped with the staff they should be, and he is on tube feed and some pureed foods, has meds several times a day. I believe I have a temporary care facility for him, about 30km away, until they can accomodate him at the local continueing care.
Hi Joan, We have spoken before. We liven the okanagan and my husband (Gerry) went into a care home last June and it was a difficult decision but we knew it was best. Yesterday he wanted to go out shopping for a shelving unit that he wanted for his bathroom. We got one that he insisted that I thought was way too big. Went to visit him today and the nursing staff said they found him up on a tab.e that he moved into the bathroom and was attempting to get up on the counter to adjust the shelving unit. I know what you mean by insisting on doing these projects no matter what they are. I'm very happy he is there. He also wanted to buy a greenhouse yesterday and has plans to make raised gardens at the facility. It's exhausting just listening. I suppose there are some differences between B.C. and Alberta but we didn't have any problem once we got the call. It must be so difficult while you are still working. Good luck with your endeavors. I feel for you!
HI laroux I know what you mean when you mention the word stubborn. My husband is at home going out on his own with a stick and falling everywhere. The dangers he puts himself in are unbelievable. It is a very hard road for the carer because you are watching them all the time. My husbands keeps saying there is nothing wrong with him and when he fall blames it on something on the ground. When I go for walks with him and he freezes I stand with him and tell him to tap his stick until he can move dont know how he manages when he is on his own. I find it a battle to deal with him as he is so angry with himself and everyone around him. I dont know how | would deal with this awful disease, but its very hard as a carer. I can relate to your husband getting up on tables to put a shelf up. I know they have no idea of danger . It is very good to be able to talk to people who understand
It is hard to advise without knowing where you are or what resources are available to you.
I believe he needs a full time carer who will anticipate his needs once he is no longer able to communicate them. He will also need mental stimulation and entertainment. Mum and I live in the UK. The only way I could ensure her needs were met involved me moving from the south west, to her home in the north east.
Once there I was able to get social services to provide care 1 +1/2 hours per day while I shopped and attended a gym (it is crucial to look after yourself and your back) She also attended a day centre one day per week. During the last year of her life we applied for and got "continuing care" funding which enabled me to go away twice, each time for one week. Whilst I was away she was cared for in her own home with support 24/7 I left hour by hour precise instructions as to her routine, diet, exercise and entertainment. Nothing can be left to chance. Mum had had too many falls to count prior to my moving in with her, including 15 falls in hospital. She didn't fall once in the 3 years we lived together, I am certain that this was because her needs were anticipated. I knew she needed the bathroom every 90 minutes, and I was there to take her. She didn't need to struggle. Every day we went out for a drive, or in her wheel chair. I was able to keep her in touch with some family members.
I would suggest the following action plan.
Audit your resources in terms of money and people and abilities
Look to increase is care package immediately so that he has help to safely eat, drink and use bathroom while you are at work.
An antidepressant was helpful in reducing my mums anxiety
Get maximum support from social services.
Consider a break from work, at least while you come to terms with all of this, after all, it is happening to you too and it is huge.
In some parts of the UK it is possible to find affordable live in care. I have also heard good reports concerning live in Philippine nurses.
Continue to search for a suitable care home. I searched in the UK but failed to find one that was fit for purpose.
I'm sorry to be so bleak about your prospects of finding a way of handing over responsibility for his care to someone else. His needs will become increasingly complex. You will need as much support from as many places as you can access, but I am certain that he needs you to retain control of his care. It won't be for ever. It was the most fulfilling thing I have ever done. Love and best wishes to you both.
I believe you are based in the US? If so, there isn't much advice I can give regarding the care facilities as It is so different there than here in the UK. However, I would just say to both you and Putland who both mentioned "stubborness" - People with PSP are not necessarily being "stubborn" when they consistantly seem to do things that we identify as risky. Changes in the brain mean that they lose the ability to risk assess and become impulsive and reckless. Doesn't really make it any easier to deal with, I know - but may give you an understanding that they are not doing it to be difficult!
I see from your profile you live in Alberta, so our experience in the UK will not be of use to you.
Two points from previous replies:
1. Sharon asked whether you still have access to the respite care? They must surely give you their reasons for the change of mind about acceptance.
2. I'll back up Kathy's comment about "stubborn" - I used to look at my late husband's behaviour as though he was a two-year old, with no conception of the consequences of his actions. The tragedy of PSP is that at least you have a chance of training a two-year old to think first.
Best of luck, and it sounds as though a live-in carer (at least during the day) might be a good idea.
Unfortunately the respite was in the same facility that turned us away. It doesn't look like they will be providing that anymore either. He's too much work for them.... They are under staffed, at least with qualified people. I believe I've got a facility lined up now, although it is 30km away, hopefully soon.
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How do other carers deal with the "difficult" days?
I am not trying to advertise a particular product, however.....
Dad newly diagnosed with PSP
To convene or not to convene???
Update on swallowing problem
