Never ending stress

[maisiecat]

I visited my husband yesterday as usual and he was slightly more confused than usual but generally ok. I got a phone call from the Home about an hour after I got home saying he wanted to talk to me. This was unusual as he doesn't get them to phone me now.
He informed me that he wants to come home and he has arranged a meeting today with me,him and the Home manager. Had he not phoned me I would have walked into this blind and due to a burst water tank in the loft I have currently a lot on.
I asked to speak to the Manager and she explained she felt he should move to the upper floor which is for people with earlier dementia.
My husband was placed in the home by Social services as all his medical team said he could not be safe at home. There were also huge safeguarding issues for me as he was very physically aggressive.
He recently asked his Parkinsons Nurse about going home. She was kind but didn't sugar coat it and said you are up most of the night,you are frequently agitated and sometimes aggressive. This would not be manageable at home.
Does anyone else feel they have no control over their life. I so often feel I am going down "Aiice's rabbit hole"

 

[Helly19682]

@maisiecat - different situation here, but yes I understand what you are saying and sympathise.
When my father wants to talk (he is at home with a live-in carer who he believes he does not need), I listen. I may well not be able to change what he does not like.
It appears from your post that he is currently the only person who believes he could come home. This is a very hard and frightening situation. I wonder if the home manager could take the line that doctors have said he must stay in the home?
I try, when I visit my Dad to be ready for anything - sulks, recriminations, playing me off against my sister, being rude to the carer. We all feel guilt, but I think we know that there are only so many options. I also find that when small everyday problems emerge (can't find the hoover charger, more frustrating calls with GP) I am more stressed and upset than I would usually be.
I hope that if and when the meeting happens, it goes as well as it can.

 

[Grannie G]

I agree about blaming the doctor @maisiecat .

It means everything is out of your hands unless the doctor agrees and you cannot be blamed for anything.

 

[Dave63]

Hi @maisiecat, I can completely relate to how you're feeling. My mum also has Parkinson's and Parkinsons related dementia. For the longest time it felt like playing a game of whack-a-mole with one issue getting sorted only to have another immediately pop up. It can really wear you down so it's important to try and accept any support you can, whether it be from family, friends or the care home. I used to feel guilty if I couldn't 'solve' a problem but the fact is there are aspects of Parkinson's (and other illnesses) which are beyond our control and the illness will progress in a certain way irrespective of what we do.

Is there a mental health team involved in your husbands care? They can be really helpful and supportive in navigating issues like this.

 

[maisiecat]

@maisiecat - different situation here, but yes I understand what you are saying and sympathise.
When my father wants to talk (he is at home with a live-in carer who he believes he does not need), I listen. I may well not be able to change what he does not like.
It appears from your post that he is currently the only person who believes he could come home. This is a very hard and frightening situation. I wonder if the home manager could take the line that doctors have said he must stay in the home?
I try, when I visit my Dad to be ready for anything - sulks, recriminations, playing me off against my sister, being rude to the carer. We all feel guilt, but I think we know that there are only so many options. I also find that when small everyday problems emerge (can't find the hoover charger, more frustrating calls with GP) I am more stressed and upset than I would usually be.
I hope that if and when the meeting happens, it goes as well as it can.

Hi @Helly19682 ,thank you for your reply. Actually it is a medical decision that he is in the Home so its neither in my gift or the Home's manager. I think she believes if she offers him to go on the upper floor or a room with a patio (not on the upper floor, ha,ha) that he will feel heard. My view is that even the smallest change will land us in the soup because he's fine when he's fine till he isn't.
The meeting is this afternoon after a morning with a handyman repairing the damage caused by the emergency plumber and as you say stress is cumulative.

 

[maisiecat]

I agree about blaming the doctor @maisiecat .

It means everything is out of your hands unless the doctor agrees and you cannot be blamed for anything.

Hi @Grannie G ,thank you for the reply. The irony is it is completely a medical decision and I don't think there is any chance of them changing it as they know a care package would fail. I think many of us are aware that the need to keep the PWD out of district general hospitals is the holy grail.

 

[maisiecat]

Hi @maisiecat, I can completely relate to how you're feeling. My mum also has Parkinson's and Parkinsons related dementia. For the longest time it felt like playing a game of whack-a-mole with one issue getting sorted only to have another immediately pop up. It can really wear you down so it's important to try and accept any support you can, whether it be from family, friends or the care home. I used to feel guilty if I couldn't 'solve' a problem but the fact is there are aspects of Parkinson's (and other illnesses) which are beyond our control and the illness will progress in a certain way irrespective of what we do.

Is there a mental health team involved in your husbands care? They can be really helpful and supportive in navigating issues like this.

Hi @Dave63, thank you for your reply. You are so right about Parkinsons and parkinsons dementia and my husband also has vascular dementia. I don't think the Home understand Parkisons that well and my husband is very late stage so just switches off and can't move at all.
The one thing that gave me hope was he did get them to phone me. I think he showed some insight into me just arriving to this meeting and how unfair that was.
Loved the whack-a-mole comment

 

[maisiecat]

So my husband has moved rooms and we now have a patio and access to the enclosed garden which is nice. I went to the Nursing home the next morning and he was shrieking for me but I stayed the day and he settled.
Fast forward to Friday and my husband had an appt with his Parkinsons specialist. He doesn't have a neurologist now just an elderly care specialist in Parkinsons. I was doing the escort and decided to risk taxis to make it easier. It cost £100. We arrived to be told we weren't on the list eventually they agreed to see us but it was very stressful for my husband.
It was quickly obvious that the Dr's knowledge of parkinsons was less than mine and when she told me that dopamine drugs didn't affect mood I felt it was a waste of time.
The worst of the appt was my husband asked the Dr if he could come home and she said she could see no reason why he couldn't. In my hand were his night reports with a long list of head butting, punching,kicking and multiple attacks on the staff.
It put me in the position of having to say that my husband couldn't be manged at home so now he is very angry with me. When we got back to the Nursing home he told me to get out.
Why does it all have to be so difficult there is no way SS would allow him home as he obviously poses a risk which means a waking night carer and they won't fund that.
Sorry for the rant, its just you guys get it.

 

[Dave63]

It was quickly obvious that the Dr's knowledge of parkinsons was less than mine and when she told me that dopamine drugs didn't affect mood I felt it was a waste of time.

OMG, was she on a work experience scheme?? It sounds like a so called medical professional has only succeeded in making a bad situation worse. I'm really sorry you and your husband had to go through that. It borders on professional incompetence.

 

[Chizz]

So my husband has moved rooms and we now have a patio and access to the enclosed garden which is nice. I went to the Nursing home the next morning and he was shrieking for me but I stayed the day and he settled.
Fast forward to Friday and my husband had an appt with his Parkinsons specialist. He doesn't have a neurologist now just an elderly care specialist in Parkinsons. I was doing the escort and decided to risk taxis to make it easier. It cost £100. We arrived to be told we weren't on the list eventually they agreed to see us but it was very stressful for my husband.
It was quickly obvious that the Dr's knowledge of parkinsons was less than mine and when she told me that dopamine drugs didn't affect mood I felt it was a waste of time.
The worst of the appt was my husband asked the Dr if he could come home and she said she could see no reason why he couldn't. In my hand were his night reports with a long list of head butting, punching,kicking and multiple attacks on the staff.
It put me in the position of having to say that my husband couldn't be manged at home so now he is very angry with me. When we got back to the Nursing home he told me to get out.
Why does it all have to be so difficult there is no way SS would allow him home as he obviously poses a risk which means a waking night carer and they won't fund that.
Sorry for the rant, its just you guys get it.

Hi @maisiecat
I feel for you.
Whatever your OH says, or the home or that Dr you saw, you know that your OH's behaviours are NOT your fault, that there is NO way he could be at home with you, and that's NOT your fault either.
In the care home he is safe and being cared for, and his being in the care home means that you are safe too.
It's very stressful and emotionally exhausting. Get some rest. Rant away if you need to release all these pent up emotions - it helps.
Hugs.

 

[maisiecat]

OMG, was she on a work experience scheme?? It sounds like a so called medical professional has only succeeded in making a bad situation worse. I'm really sorry you and your husband had to go through that. It borders on professional incompetence.

Thank you @Dave63, I have no faith left for the NHS and I was a nurse. I also feel the elderly are getting very substandard treatment because this was about his parkinsons not his dementia. I am sure he will settle again but it shouldn't be made so hard

 

[maisiecat]

Hi @maisiecat
I feel for you.
Whatever your OH says, or the home or that Dr you saw, you know that your OH's behaviours are NOT your fault, that there is NO way he could be at home with you, and that's NOT your fault either.
In the care home he is safe and being cared for, and his being in the care home means that you are safe too.
It's very stressful and emotionally exhausting. Get some rest. Rant away if you need to release all these pent up emotions - it helps.
Hugs.

Hi @Chizz ,thank you for your kind words. I think what none of them get is how painful i find it that I can't look after him, my position is as awful as his just in a different way.
I don't go on Sundays as transport is non existent so I am tackling an awful bit of the garden and I think the physical effort is helping my anger.

 

[Banjomansmate]

Thank you @Dave63, I have no faith left for the NHS and I was a nurse. I also feel the elderly are getting very substandard treatment because this was about his parkinsons not his dementia. I am sure he will settle again but it shouldn't be made so hard

Why do they seem to compartmentalise the medical side? Even though the appointment was for your husband’s Parkinson’s illness there should still have been an over all view to take into account the dementia!

 

[Dave63]

Why do they seem to compartmentalise the medical side? Even though the appointment was for your husband’s Parkinson’s illness there should still have been an over all view to take into account the dementia!

That's so true. I can't think of a single appointment I've taken mum to where they were aware of all her primary diagnoses. You would think it would be a simple case of entering her NHS number into the computer and it would list everything. If that is how it works then they obviously don't use it because as you say they just seem to focus on their area of expertise without any consideration of how any treatment or advice may effect other areas. A perfect example was when a pain specialist prescribed mum pain patches for her knees but they contained a drug which is known to mess with Parkinson's medication. Within 48hrs she was rushed to hospital in pretty much a comatose state and with dangerously low blood pressure. Fortunately the hospital consultant was on the ball and figured out what had caused it.

 

[canary]

I'm afraid it has always been like that - the doctors only thinking about their own speciality. It's a good job that us carers are on the ball.

I think that as people's health becomes more complex, though, they are going to have to look at their patients in a more holistic way