Losing my mind

DILhelp

Registered User
Jan 31, 2016
118
London
feeling very emotional today. Since lockdown we have been indoors without any respite with my mother in law who has alzheimer's dementia. Feeling quite sad and stressed out as I should be working from home too. Feeling very stressed.
 

Mydarlingdaughter

Registered User
Oct 25, 2019
134
North East England UK
Hi
Its really difficult at the moment but you have so much more to deal with. Supporting MiL has been going on for quite some time as well hasnt it?
I'm wondering why you haven't been out at all? Do you mean literally? I know some people haven't got a garden. The stresses of the carer role are so much more intense if you cant' go out at all. Is it because you don't have anyone to Keep an eye on MiL? What about hubby?
Do you have any kind of social support at all? Hopefully others will chime in to offer suggestions.
 

DILhelp

Registered User
Jan 31, 2016
118
London
I'm
Hi
Its really difficult at the moment but you have so much more to deal with. Supporting MiL has been going on for quite some time as well hasnt it?
I'm wondering why you haven't been out at all? Do you mean literally? I know some people haven't got a garden. The stresses of the carer role are so much more intense if you cant' go out at all. Is it because you don't have anyone to Keep an eye on MiL? What about hubby?
Do you have any kind of social support at all? Hopefully others will chime in to offer suggestions.
I'm so sorry I just saw your lovely reply now. I have been in touch with my GP and hopefully start talking therapy. Hubby is a godsend he literally does everything with MIL. He does so much. We have a garden. I find MIL shouting and aggression very upsetting especially when channelled towards me. I know I need to toughen up. We have to work from home so it's even more difficult. I can't do it so now I am on sick leave. I wish I could relax and not let things get to me. I'm too emotional.
 

Mydarlingdaughter

Registered User
Oct 25, 2019
134
North East England UK
Good that you have been in touch with the GP and the talking therapy may help you find some ways to deal with the stress and sadness.
You say you are on sick leave, obviously good idea however it seems you have 2 jobs, one is as DIL Help and one is paid employment?
Can you get some sick leave from your role as DIL Help? While you are in the same house you are on call full time. The never knowing when yiu will be called upon to sort a crisis will ramp up the stress and anxiety.
Maybe stay away somewhere with a friend or even in a budget hotel chain for a couple of days?
I have experienced the shouting and agression and we know its part of the illness but its very hard to deal with. I hope you can keep the GP informed about these symptoms.
 

lemonbalm

Registered User
May 21, 2018
664
Hello @DILhelp. It's really hard dealing with aggression and difficult not to take it personally, even if we know that the person can't control it. You're always waiting for the next onslaught too, which makes it incredibly stressful. I hope the therapy helps. I hope you can at least get out for a walk sometimes or do some gardening on your own. Being outside is so good for lifting the mood.

Is your mother in law on any medication to try and reduce the aggressive behaviour?
 

DILhelp

Registered User
Jan 31, 2016
118
London
Good that you have been in touch with the GP and the talking therapy may help you find some ways to deal with the stress and sadness.
You say you are on sick leave, obviously good idea however it seems you have 2 jobs, one is as DIL Help and one is paid employment?
Can you get some sick leave from your role as DIL Help? While you are in the same house you are on call full time. The never knowing when yiu will be called upon to sort a crisis will ramp up the stress and anxiety.
Maybe stay away somewhere with a friend or even in a budget hotel chain for a couple of days?
I have experienced the shouting and agression and we know its part of the illness but its very hard to deal with. I hope you can keep the GP informed about these symptoms.
Thanku since lockdown we have had no respite. When brother in law comes round it's to cover a couple of hours so me and hubby can have an evening meal together.

Gp therapist said MIL condition cannot be changed I will need to change my mindset. I have started yoga which hopefully I can keep up. What upsets me as that alot people say we should put MIL in a home. We know she wouldn't last as she has to be spoon fed and alot of times she doesn't want to drink eat or leave her bed. I'm going to try to incorporate more relaxing things into my life like crafts which I never get time to do.
I recently realized I let my MIL basically take over my life...I actually let her take over my life. My health has taken a battering for the last 3-4years. I sacrificed spices in my cooking. As I'm living in MIL house with her i basically wasn't surrounded by my cookware homeware etc. I am slowly trying to have my things around.
When carer was here b4 lockdown I would lock away my things and never felt this was my home. I felt my things were not safe.
My hubby said MIL is in safe hands with us, I always make nutritional meals for MIL. she's comfortable but it's taken a toll on me. I'm a sensitive soul and I need to take a step back. I noticed I've been eating a lot so hopefully once therapy starts I can also get back on course.
Thanku again for the lovely reply x
 

DILhelp

Registered User
Jan 31, 2016
118
London
Hello @DILhelp. It's really hard dealing with aggression and difficult not to take it personally, even if we know that the person can't control it. You're always waiting for the next onslaught too, which makes it incredibly stressful. I hope the therapy helps. I hope you can at least get out for a walk sometimes or do some gardening on your own. Being outside is so good for lifting the mood.

Is your mother in law on any medication to try and reduce the aggressive behaviour?
She is on anti depressants which she has been on since age 18. She is now 80 years old. I will mention to hubby if MIL can prescribe something. Alot of times I end up shaking like a leaf. Especially when we are only trying to help her. I have tried to incorporate yoga into my life hopefully I can become more zen like. Xxxx
 

canary

Registered User
Feb 25, 2014
13,593
South coast
What upsets me as that alot people say we should put MIL in a home. We know she wouldn't last as she has to be spoon fed and alot of times she doesn't want to drink eat or leave her bed.
I just thought Id mention that when Mum was in her care home I saw the carers spoon-feeding the ones who needed this. They were very caring and encouraging. Its not like in hospital where you are just left with the food plonked down in front of you
 

DILhelp

Registered User
Jan 31, 2016
118
London
I just thought Id mention that when Mum was in her care home I saw the carers spoon-feeding the ones who needed this. They were very caring and encouraging. Its not like in hospital where you are just left with the food plonked down in front of you
Aw thank you. We were told by a certain care home they will not force feed patients. With my MIL we have to distract her or tell her a story to get her to eat. Or we keep trying until she eats. Sometimes it is a very long process. I know she needs specialist care but we are afraid she will not last.
 

canary

Registered User
Feb 25, 2014
13,593
South coast
We were told by a certain care home they will not force feed patients.
Spoon feeding is not the same as force feeding. It is a sad fact that as dementia reaches end of life, the body shuts down and the person refuses food. Forcing food into a tightly shut mouth at this point would be considered force feeding, but spoon feeding (as you would a baby) is perfectly OK.
 

lemonbalm

Registered User
May 21, 2018
664
I just thought Id mention that when Mum was in her care home I saw the carers spoon-feeding the ones who needed this. They were very caring and encouraging. Its not like in hospital where you are just left with the food plonked down in front of you
They carers at my mum's care home spoon feed the residents who need it too,. They also take trays up to those who have to or wish to stay in bed/in their rooms. The will encourage residents to eat and drink but of course will never force them to.
 

DILhelp

Registered User
Jan 31, 2016
118
London
Spoon feeding is not the same as force feeding. It is a sad fact that as dementia reaches end of life, the body shuts down and the person refuses food. Forcing food into a tightly shut mouth at this point would be considered force feeding, but spoon feeding (as you would a baby) is perfectly OK.
That's true we never force feed MIL just merely distracted her or we keep trying until she finishes her food. Thanku for the clarification.
 

DILhelp

Registered User
Jan 31, 2016
118
London
They carers at my mum's care home spoon feed the residents who need it too,. They also take trays up to those who have to or wish to stay in bed/in their rooms. The will encourage residents to eat and drink but of course will never force them to.
Aw that's good to know.
 

Hazara8

Registered User
Apr 6, 2015
529
She is on anti depressants which she has been on since age 18. She is now 80 years old. I will mention to hubby if MIL can prescribe something. Alot of times I end up shaking like a leaf. Especially when we are only trying to help her. I have tried to incorporate yoga into my life hopefully I can become more zen like. Xxxx
Zen enjoys the luxury of isolated contemplation. Something nigh on impossible when living a caring relationship with dementia. In fact that relationship brings about an unexpected awareness of the meaning of life, in as much as it tends to eradicate the trivial and focus through necessity on the "reality". Meditation becomes possible in the quiet hours, completely devoid of any outside influence whatsoever. Then the mind might come upon that silence which knows nothing about anxiety, hope, despair, frustration , stifled anger, abject sorrow and depression, and so on. But when you are doing as you are clearly doing and have done so for a long time, it is not surprising when the mind and body become weary and fragile. It is yet another example of how wonderful people are, in effect putting their own lives on hold whilst giving the continuing unselfish Care to a vulnerable and innocent person who would simply perish without that Care.

And when friends in all sincerity make mention of Care Homes in the light of dementia in a loved one, which has become intense - then, yes, the disease does not improve as such and there comes a time in all of these real life stories, when such a transition arrives. But only YOU will know when, because only YOU will know there is no choice.

The running theme which sings out from so many of the stories here, is that very uneasy sense of ' guilt' if and when the transition into Care becomes a very real necessity. It is the enormity of that transition which disrupts a given life - the Carer - whilst the one living with the disease moves into another environment, translated by their dementia in both a complex and often totally unpredictable way.

BEST INTERESTS governs the Care of a loved one living with a dementia and it has to be so. You are clearly upholding that ethic despite the toll it is taking on your own welfare. In a way that is " Zen" in action. But you need and deserve a moment to breathe and replenish, because the dementia knows nothing about the need to rest nor the abject exhaustion it brings about in the one who is Caring. And the one living with that dementia, if they were able, would not wish that on you at all.

With warmest wishes.
 

DILhelp

Registered User
Jan 31, 2016
118
London
Zen enjoys the luxury of isolated contemplation. Something nigh on impossible when living a caring relationship with dementia. In fact that relationship brings about an unexpected awareness of the meaning of life, in as much as it tends to eradicate the trivial and focus through necessity on the "reality". Meditation becomes possible in the quiet hours, completely devoid of any outside influence whatsoever. Then the mind might come upon that silence which knows nothing about anxiety, hope, despair, frustration , stifled anger, abject sorrow and depression, and so on. But when you are doing as you are clearly doing and have done so for a long time, it is not surprising when the mind and body become weary and fragile. It is yet another example of how wonderful people are, in effect putting their own lives on hold whilst giving the continuing unselfish Care to a vulnerable and innocent person who would simply perish without that Care.

And when friends in all sincerity make mention of Care Homes in the light of dementia in a loved one, which has become intense - then, yes, the disease does not improve as such and there comes a time in all of these real life stories, when such a transition arrives. But only YOU will know when, because only YOU will know there is no choice.

The running theme which sings out from so many of the stories here, is that very uneasy sense of ' guilt' if and when the transition into Care becomes a very real necessity. It is the enormity of that transition which disrupts a given life - the Carer - whilst the one living with the disease moves into another environment, translated by their dementia in both a complex and often totally unpredictable way.

BEST INTERESTS governs the Care of a loved one living with a dementia and it has to be so. You are clearly upholding that ethic despite the toll it is taking on your own welfare. In a way that is " Zen" in action. But you need and deserve a moment to breathe and replenish, because the dementia knows nothing about the need to rest nor the abject exhaustion it brings about in the one who is Caring. And the one living with that dementia, if they were able, would not wish that on you at all.

With warmest wishes.
God bless you for the lovely message.

Even though life is immensely difficult I have the most supporting husband. Sometimes I feel life would have been different if I didn't have this caring responsibilities. Would I have had a decent husband? I do always count my blessings even in this situation. All we can do is make the person we care for have a comfortable life. You are so right about zen. I know I'm clutching on straws. We have to find the small pleasures in life to keep going on.
God bless to all the carers out there xx big hug to all. What a lovely group here xx
 

nita

Registered User
Dec 30, 2011
1,930
Essex
I just read your message @DILhelp and I feel for you in your utter desperation. It must be an awful situation long term - I only had that for a short while when my Mum had a very bad urinary tract infection and she became paranoid. That isn't the situation with your MIL, is it? My mother had continuous infections and always seemed to be on antibiotics.

Your GP doesn't sound very caring. Is there a specialist mental health team you can refer to? I wonder about the anti-depressants - you say she has been on them nearly all her life but I wonder if they are so appropriate now and could be making her more agitated? She may need something to calm her, antipsychotics are also called major tranquillisers and they can have this effect. A number of people on here have relatives who take things like risperidone - not without their problems of course and a big step to take as they are not always recommended for dementia.

At our local hospital there was a specialist in geriatric psychiatric medicine. I wonder if there is any community-based service like this, though I know how inadequate such services are.

You say your husband does a lot of the "care-giving" - can you not keep right out of the way at those times so you can enjoy some peaceful moments to yourself. Also, there are carers' organisations that offer sitting services to give you a break.

Hoping you can get some more help - everything is worse in these times when we are restricted anyway.
 

DILhelp

Registered User
Jan 31, 2016
118
London
I just read your message @DILhelp and I feel for you in your utter desperation. It must be an awful situation long term - I only had that for a short while when my Mum had a very bad urinary tract infection and she became paranoid. That isn't the situation with your MIL, is it? My mother had continuous infections and always seemed to be on antibiotics.

Your GP doesn't sound very caring. Is there a specialist mental health team you can refer to? I wonder about the anti-depressants - you say she has been on them nearly all her life but I wonder if they are so appropriate now and could be making her more agitated? She may need something to calm her, antipsychotics are also called major tranquillisers and they can have this effect. A number of people on here have relatives who take things like risperidone - not without their problems of course and a big step to take as they are not always recommended for dementia.

At our local hospital there was a specialist in geriatric psychiatric medicine. I wonder if there is any community-based service like this, though I know how inadequate such services are.

You say your husband does a lot of the "care-giving" - can you not keep right out of the way at those times so you can enjoy some peaceful moments to yourself. Also, there are carers' organisations that offer sitting services to give you a break.

Hoping you can get some more help - everything is worse in these times when we are restricted anyway.
Thanku so much for the lovely message.
My hubby does so much and is forever telling me to relax. I find it very hard to switch off now so I am so looking forward to this talking therapist via gp which starts next month. I have taken so much time off work and worried I may lose my job. I really can't juggle working from home and caring both at the moment. I'm finding praying and yoga has helped. Hopefully I'm on the right path. I am a worrier. I feel the cleaning takes alot of time. Especially with double incontinence. I managed to stock up on mattress protectors from Amazon. It's a nightmare as we are changing MIL bedding 3 times a day and it's a double bed. Sometimes I just want to run away.
This forum is really helping. Hubby says it's because of me that keeps him going looking after his mum. Sadly his 2 older brothers don't help much. Their response is put her in a carehome but hubby thinks she wont last 5 minutes. Yes this lockdown has really taken its toll x

God bless xxx
 

PatAnn

Registered User
Mar 6, 2019
35
Thanku so much for the lovely message.
My hubby does so much and is forever telling me to relax. I find it very hard to switch off now so I am so looking forward to this talking therapist via gp which starts next month. I have taken so much time off work and worried I may lose my job. I really can't juggle working from home and caring both at the moment. I'm finding praying and yoga has helped. Hopefully I'm on the right path. I am a worrier. I feel the cleaning takes alot of time. Especially with double incontinence. I managed to stock up on mattress protectors from Amazon. It's a nightmare as we are changing MIL bedding 3 times a day and it's a double bed. Sometimes I just want to run away.
This forum is really helping. Hubby says it's because of me that keeps him going looking after his mum. Sadly his 2 older brothers don't help much. Their response is put her in a carehome but hubby thinks she wont last 5 minutes. Yes this lockdown has really taken its toll x

God bless xxx
My husband was given an occupational therapist by his GP and she arranged a hospital bed for him we had a double bed but with his incontinence it wasnt a good idea the mattress was becoming such a pain to keep dry and clean and I was also struggling to keep up with the washing and helping him to get in and out of bed I had to buy my own single bed and get rid of most of the furniture but it has been a godsend a lot easier to keep clean and sanitised perhaps you could consider it as an option ?
 

DILhelp

Registered User
Jan 31, 2016
118
London
My husband was given an occupational therapist by his GP and she arranged a hospital bed for him we had a double bed but with his incontinence it wasnt a good idea the mattress was becoming such a pain to keep dry and clean and I was also struggling to keep up with the washing and helping him to get in and out of bed I had to buy my own single bed and get rid of most of the furniture but it has been a godsend a lot easier to keep clean and sanitised perhaps you could consider it as an option ?
The double bed mattress protector is helping atm. But we have to keep up the washing. There isn't much furniture in MIL as during the lockdown I rearranged the furniture and managed to keep everything filed away xx