Just Venting, I Guess

[AlzWife]

Had to take a sick day today. I work only one day/week & it's a good respite from caring for hubby 24/7 & I need the money. Being unable to function "normally" for the last few days made me realize that I really get no help & I am totally burnt out. I asked my son who lives with us to take over dog walking today and he did; he also did the shopping two days ago, but I am still full-time carer and cook. I felt like passing out last night after cooking dinner.

Then, there's the emotional toll. Husband asks the same questions over and over. I have to literally go in another room for a break. When I'm sick it feels so overwhelming. Then I have to keep ears open for anything funny and keep the dog near me at all time so hubby doesn't overfeed him or let him eat something dangerous or let him out onto the road. Total vigilance 100% of the time even while nursing a flu. This has made me feel even more worried for my health in general. I am a hostage. I canot take care of myself. I am under siege.

I swear that just being in the same room with hubby causes me palpable stress. I do not see this changing. I have compassion fatigue.

The disconnection is the hardest part. He is not present except to siphon off my energy. He cannot process more than one simple phrase; even then I have to repeat it. If I try to convey a series of simple connected ideas/phrases --like I am doing this because of this and that, he is totally lost.

Ten minutes ago he tries to put on his vinyl raincoat to go outside in freezing weather. I give him his winter coat, boots & crampons. I tell him twice that it's very icy. He acts angry. He struggles with the crampons and won't let me help. I take one boot and place the crampon in a few seconds. He struggles with the other for five minutes and I let him be. I come downstairs with the dog because I just can't sit there waiting for a fight or getting stressed. Also, I know he'll be opening all kinds of doors and gates and I don't know why he's going outside & don't even want to ask. Probably to get more firewood. It will be getting dark soon & it is freezing outside. He comes down here asking for the gloves--the work gloves that are always in the box by the woodstove. He acts really surprised when I tell him that's where they are. He uses them multiple times a time to load the woodstove. It's like living with a crazy person. I just try to avoid him but I also have to watch him all the time.

Just realized that since I am sick I did not eat or make him any food today so he's probably feeling extra batty. Dont know how long I can live like this.

 

[Angelsoul]

Hi, you sound so low. We all totally understand how it can be,especially hard when we are feeling unwell but have no choice and have to continue with what we have to do.
You say your son lives with you...can he look after him for a day or two so you can maybe go get some respite with family/friends.
You need a break. X

 

[sapphire turner]

Yes it’s only when you get ill that you realise the burden that you normally carry. It’s a good wake up call, you need to get more help somehow. Otherwise it is a vicious circle sapping your health. Are you getting attendance allowance? I use mine to get a carer in two mornings a week to have a break. It sounds like you more than qualify! Sending love ❤️ xxx

 

[Hazara8]

Had to take a sick day today. I work only one day/week & it's a good respite from caring for hubby 24/7 & I need the money. Being unable to function "normally" for the last few days made me realize that I really get no help & I am totally burnt out. I asked my son who lives with us to take over dog walking today and he did; he also did the shopping two days ago, but I am still full-time carer and cook. I felt like passing out last night after cooking dinner.

Then, there's the emotional toll. Husband asks the same questions over and over. I have to literally go in another room for a break. When I'm sick it feels so overwhelming. Then I have to keep ears open for anything funny and keep the dog near me at all time so hubby doesn't overfeed him or let him eat something dangerous or let him out onto the road. Total vigilance 100% of the time even while nursing a flu. This has made me feel even more worried for my health in general. I am a hostage. I canot take care of myself. I am under siege.

I swear that just being in the same room with hubby causes me palpable stress. I do not see this changing. I have compassion fatigue.

The disconnection is the hardest part. He is not present except to siphon off my energy. He cannot process more than one simple phrase; even then I have to repeat it. If I try to convey a series of simple connected ideas/phrases --like I am doing this because of this and that, he is totally lost.

Ten minutes ago he tries to put on his vinyl raincoat to go outside in freezing weather. I give him his winter coat, boots & crampons. I tell him twice that it's very icy. He acts angry. He struggles with the crampons and won't let me help. I take one boot and place the crampon in a few seconds. He struggles with the other for five minutes and I let him be. I come downstairs with the dog because I just can't sit there waiting for a fight or getting stressed. Also, I know he'll be opening all kinds of doors and gates and I don't know why he's going outside & don't even want to ask. Probably to get more firewood. It will be getting dark soon & it is freezing outside. He comes down here asking for the gloves--the work gloves that are always in the box by the woodstove. He acts really surprised when I tell him that's where they are. He uses them multiple times a time to load the woodstove. It's like living with a crazy person. I just try to avoid him but I also have to watch him all the time.

Just realized that since I am sick I did not eat or make him any food today so he's probably feeling extra batty. Dont know how long I can live like this.

Every time l read such an account it reinforces my overwhelming conviction that outside the actuality of dementia care, it is virtually impossible for someone to have any real notion as to what takes place in the ongoing relationship with a loved one living with dementia. You mention how you feel when in the company of your husband and that alone is a very important point. That sense of perpetual expectation and anxiety which never abates, unless one is removed physically from the one who generates it. This is just one aspect of course. The exhaustion, mental and physical, would not be tolerated in a normal environment. The pathway of dementia care however seems to know no boundaries. In the Care facility you have trained Staff who administer care and nursing within a controlled environment and to a great extent, detached one. But caring at home is light years away from that. Its you. Just you for the most part, coping and striving to obey the rules as best you can. Do not get angry, do not contradict, do not give out negative signals, do not react instinctively... a great many " do nots", whilst paying attention to nourishment and bathroom needs, which alone can embrace half the day. So yes, if your son can primarily understand the real nature of dementia and how it plays upon capacity and mood and can be deceptive and seemingly without an ounce of empathy, and how this transforms normal behaviour in a person, yet be fully aware that the person is NOT making that behaviour happen, the disease is - then never forget that fact for one moment whilst acting out as Carer, it will help alleviate some pressure which currently afflicts your waking hours and hopefully allow a modicum of respite. I have sometimes looked at photographs of myself taken during my own journey with dementia. It was a shock. I looked haggard and worn out. Something l did not sense at the time because your whole being is focused on care, hour after hour, day after day, week after week and so forth. Thus, like many who contribute to this forum, one understands you and sincerely so. I remember very well during my time volunteering in a Care Home with dementia residents, each one presenting with a specific dementia, how much easier it was to offer genuine comfort and have time to do so. But to sit with a loved one and just be there, perhaps holding a hand, quietly and often without a single word being spoken, for an hour or two, in a wholly appropriate environment with others acting out all those necessary tasks around you - is nigh on impossible one to one at home. Therein lies the rub. And it is therefore imperative that those official bodies who purport to act as sources of respite, do so not only with practicable initiatives as to a potential care plan, but more importantly, do so with a sincere comprehension and an authentic empathy, borne out of understanding the sheer reality of dementia care as cited so powerfully here.

 

[AlzWife]

Hi, you sound so low. We all totally understand how it can be,especially hard when we are feeling unwell but have no choice and have to continue with what we have to do.
You say your son lives with you...can he look after him for a day or two so you can maybe go get some respite with family/friends.
You need a break. X

Thanks for your reply. As usual, I bounced back. Made sandwiches and parked us in front of the TV for a few hours. Cuddled with the dog and felling better. I do need to schedule time away & get help. I’m working on it. Thanks for listening!

 

[AlzWife]

Every time l read such an account it reinforces my overwhelming conviction that outside the actuality of dementia care, it is virtually impossible for someone to have any real notion as to what takes place in the ongoing relationship with a loved one living with dementia. You mention how you feel when in the company of your husband and that alone is a very important point. That sense of perpetual expectation and anxiety which never abates, unless one is removed physically from the one who generates it. This is just one aspect of course. The exhaustion, mental and physical, would not be tolerated in a normal environment. The pathway of dementia care however seems to know no boundaries. In the Care facility you have trained Staff who administer care and nursing within a controlled environment and to a great extent, detached one. But caring at home is light years away from that. Its you. Just you for the most part, coping and striving to obey the rules as best you can. Do not get angry, do not contradict, do not give out negative signals, do not react instinctively... a great many " do nots", whilst paying attention to nourishment and bathroom needs, which alone can embrace half the day. So yes, if your son can primarily understand the real nature of dementia and how it plays upon capacity and mood and can be deceptive and seemingly without an ounce of empathy, and how this transforms normal behaviour in a person, yet be fully aware that the person is NOT making that behaviour happen, the disease is - then never forget that fact for one moment whilst acting out as Carer, it will help alleviate some pressure which currently afflicts your waking hours and hopefully allow a modicum of respite. I have sometimes looked at photographs of myself taken during my own journey with dementia. It was a shock. I looked haggard and worn out. Something l did not sense at the time because your whole being is focused on care, hour after hour, day after day, week after week and so forth. Thus, like many who contribute to this forum, one understands you and sincerely so. I remember very well during my time volunteering in a Care Home with dementia residents, each one presenting with a specific dementia, how much easier it was to offer genuine comfort and have time to do so. But to sit with a loved one and just be there, perhaps holding a hand, quietly and often without a single word being spoken, for an hour or two, in a wholly appropriate environment with others acting out all those necessary tasks around you - is nigh on impossible one to one at home. Therein lies the rub. And it is therefore imperative that those official bodies who purport to act as sources of respite, do so not only with practicable initiatives as to a potential care plan, but more importantly, do so with a sincere comprehension and an authentic empathy, borne out of understanding the sheer reality of dementia care as cited so powerfully here.

Thanks for your empathy. It’s a relentless disease, but if I can make some plans for help, maybe not a relentless situation. Thank you again for listening & understanding. I’m feeling better tonight. Being sick made everything feel like rock bottom.

 

[AlzWife]

Yes it’s only when you get ill that you realise the burden that you normally carry. It’s a good wake up call, you need to get more help somehow. Otherwise it is a vicious circle sapping your health. Are you getting attendance allowance? I use mine to get a carer in two mornings a week to have a break. It sounds like you more than qualify! Sending love ❤️ xxx

You’re absolutely right. I am working on getting help & I’m not feeling shy about it any more. Thanks for the love & understanding ear!

 

[special 1]

Had to take a sick day today. I work only one day/week & it's a good respite from caring for hubby 24/7 & I need the money. Being unable to function "normally" for the last few days made me realize that I really get no help & I am totally burnt out. I asked my son who lives with us to take over dog walking today and he did; he also did the shopping two days ago, but I am still full-time carer and cook. I felt like passing out last night after cooking dinner.

Then, there's the emotional toll. Husband asks the same questions over and over. I have to literally go in another room for a break. When I'm sick it feels so overwhelming. Then I have to keep ears open for anything funny and keep the dog near me at all time so hubby doesn't overfeed him or let him eat something dangerous or let him out onto the road. Total vigilance 100% of the time even while nursing a flu. This has made me feel even more worried for my health in general. I am a hostage. I canot take care of myself. I am under siege.

I swear that just being in the same room with hubby causes me palpable stress. I do not see this changing. I have compassion fatigue.

The disconnection is the hardest part. He is not present except to siphon off my energy. He cannot process more than one simple phrase; even then I have to repeat it. If I try to convey a series of simple connected ideas/phrases --like I am doing this because of this and that, he is totally lost.

Ten minutes ago he tries to put on his vinyl raincoat to go outside in freezing weather. I give him his winter coat, boots & crampons. I tell him twice that it's very icy. He acts angry. He struggles with the crampons and won't let me help. I take one boot and place the crampon in a few seconds. He struggles with the other for five minutes and I let him be. I come downstairs with the dog because I just can't sit there waiting for a fight or getting stressed. Also, I know he'll be opening all kinds of doors and gates and I don't know why he's going outside & don't even want to ask. Probably to get more firewood. It will be getting dark soon & it is freezing outside. He comes down here asking for the gloves--the work gloves that are always in the box by the woodstove. He acts really surprised when I tell him that's where they are. He uses them multiple times a time to load the woodstove. It's like living with a crazy person. I just try to avoid him but I also have to watch him all the time.

Just realized that since I am sick I did not eat or make him any food today so he's probably feeling extra batty. Dont know how long I can live like this.

Morning. Hope you are feeling a bit better today. I know how you feel. I was awake yesterday from 3am, Went to bed at say 6 30pm and up again at 8pm💔 and again 11pm I have had say 2 hours sleep if that. What a life. Just like you burnt out. Look after yourself. Lots of hugs.

 

[Hazara8]

Thanks for your empathy. It’s a relentless disease, but if I can make some plans for help, maybe not a relentless situation. Thank you again for listening & understanding. I’m feeling better tonight. Being sick made everything feel like rock bottom.

Of course. Anytime one's health is not 100% that alone adds huge pressure to the situation. And seeking help is both prudent and imperative. Life can be often hard and unpredictable, but dementia care is to a great extent a guaranteed challenge which can be life changing. This platform endorses that fact and the sharing of real life stories is in itself therapeutic.

 

[AlzWife]

Of course. Anytime one's health is not 100% that alone adds huge pressure to the situation. And seeking help is both prudent and imperative. Life can be often hard and unpredictable, but dementia care is to a great extent a guaranteed challenge which can be life changing. This platform endorses that fact and the sharing of real life stories is in itself therapeutic.

Yes, sharing and getting replies has made me feel much more purposeful and less lonely. Thank you!

 

[AlzWife]

Morning. Hope you are feeling a bit better today. I know how you feel. I was awake yesterday from 3am, Went to bed at say 6 30pm and up again at 8pm💔 and again 11pm I have had say 2 hours sleep if that. What a life. Just like you burnt out. Look after yourself. Lots of hugs.

Special1--try to get your rest! Thank you for replying!

 

[JaxG]

@AlzWife and @Hazara8 you have expressed the experience of caring for someone with dementia so eloquently, but I have found getting others to understand this reality to be virtually impossible, even the so called 'experts'. I have been offered 8 weeks of respite a year, but the care home is so booked up that this is not going to happen. I had to involve the Older Adult Mental Health team earlier this year, due to aggression and intimidation. I received a summary from the safeguarding team last weekend and it said that the previous case in 2021 was closed because I refused to leave!! My husband had assaulted me twice , the police had been involved, but the SW decided after a brief chat that my OH had capacity, thrust a few leaflets in his hand and left. How can someone who has never been violent or verbally abusive in the past be considered to have capacity? And the only solution? Sell our home and put myself into financial hardship - not easy to start again in your mid 60's. I have been so shocked and disgusted by how little support there is for Carers of dementia patients - it is classed as a mental health issue rather than a disease and this seems to allow them to fob you off with minimum support or concern.

 

[jimkd]

Had to take a sick day today. I work only one day/week & it's a good respite from caring for hubby 24/7 & I need the money. Being unable to function "normally" for the last few days made me realize that I really get no help & I am totally burnt out. I asked my son who lives with us to take over dog walking today and he did; he also did the shopping two days ago, but I am still full-time carer and cook. I felt like passing out last night after cooking dinner.

Then, there's the emotional toll. Husband asks the same questions over and over. I have to literally go in another room for a break. When I'm sick it feels so overwhelming. Then I have to keep ears open for anything funny and keep the dog near me at all time so hubby doesn't overfeed him or let him eat something dangerous or let him out onto the road. Total vigilance 100% of the time even while nursing a flu. This has made me feel even more worried for my health in general. I am a hostage. I canot take care of myself. I am under siege.

I swear that just being in the same room with hubby causes me palpable stress. I do not see this changing. I have compassion fatigue.

The disconnection is the hardest part. He is not present except to siphon off my energy. He cannot process more than one simple phrase; even then I have to repeat it. If I try to convey a series of simple connected ideas/phrases --like I am doing this because of this and that, he is totally lost.

Ten minutes ago he tries to put on his vinyl raincoat to go outside in freezing weather. I give him his winter coat, boots & crampons. I tell him twice that it's very icy. He acts angry. He struggles with the crampons and won't let me help. I take one boot and place the crampon in a few seconds. He struggles with the other for five minutes and I let him be. I come downstairs with the dog because I just can't sit there waiting for a fight or getting stressed. Also, I know he'll be opening all kinds of doors and gates and I don't know why he's going outside & don't even want to ask. Probably to get more firewood. It will be getting dark soon & it is freezing outside. He comes down here asking for the gloves--the work gloves that are always in the box by the woodstove. He acts really surprised when I tell him that's where they are. He uses them multiple times a time to load the woodstove. It's like living with a crazy person. I just try to avoid him but I also have to watch him all the time.

Just realized that since I am sick I did not eat or make him any food today so he's probably feeling extra batty. Dont know how long I can live like this.

You've not said if you have asked or gotten any support from social services, doctor etc. Just plodding on while things get worse so gradually or in steps, you might not notice a bar has been reached. If you are forgetting to feed him, if your own health is impacted, if he is going out unsupervised or you are unable to control him going out then their are risks that need to be assessed, monitored and mitigated by Doctor and Social services. They may have done this in the past but they need to be aware of worsening situations. Its very easy for them to just decide you are there and they need not intervene if they are not kept in the picture and if you are failing, through no fault of your own . You can try supervision 100% but you have to sleep and very soon he will be trying to leave during the night which will be extremely dangerous and you will have difficulty stopping him even if you lock up and hide all the keys. Social services offer almost nothing for night cover. It may be time he goes into to care to save you.

 

[leny connery]

Had to take a sick day today. I work only one day/week & it's a good respite from caring for hubby 24/7 & I need the money. Being unable to function "normally" for the last few days made me realize that I really get no help & I am totally burnt out. I asked my son who lives with us to take over dog walking today and he did; he also did the shopping two days ago, but I am still full-time carer and cook. I felt like passing out last night after cooking dinner.

Then, there's the emotional toll. Husband asks the same questions over and over. I have to literally go in another room for a break. When I'm sick it feels so overwhelming. Then I have to keep ears open for anything funny and keep the dog near me at all time so hubby doesn't overfeed him or let him eat something dangerous or let him out onto the road. Total vigilance 100% of the time even while nursing a flu. This has made me feel even more worried for my health in general. I am a hostage. I canot take care of myself. I am under siege.

I swear that just being in the same room with hubby causes me palpable stress. I do not see this changing. I have compassion fatigue.

The disconnection is the hardest part. He is not present except to siphon off my energy. He cannot process more than one simple phrase; even then I have to repeat it. If I try to convey a series of simple connected ideas/phrases --like I am doing this because of this and that, he is totally lost.

Ten minutes ago he tries to put on his vinyl raincoat to go outside in freezing weather. I give him his winter coat, boots & crampons. I tell him twice that it's very icy. He acts angry. He struggles with the crampons and won't let me help. I take one boot and place the crampon in a few seconds. He struggles with the other for five minutes and I let him be. I come downstairs with the dog because I just can't sit there waiting for a fight or getting stressed. Also, I know he'll be opening all kinds of doors and gates and I don't know why he's going outside & don't even want to ask. Probably to get more firewood. It will be getting dark soon & it is freezing outside. He comes down here asking for the gloves--the work gloves that are always in the box by the woodstove. He acts really surprised when I tell him that's where they are. He uses them multiple times a time to load the woodstove. It's like living with a crazy person. I just try to avoid him but I also have to watch him all the time.

Just realized that since I am sick I did not eat or make him any food today so he's probably feeling extra batty. Dont know how long I can live like this.

 

[leny connery]

BIG hugs, it is just breathtaking to read it how much this disease take from the carer, and the sufferer. good advice given here, please do get help, get respite care from him but most importantly for yourself. and soon. you sound at the end of your endurance. i would be.

 

[Chizz]

Hi @AlzWife

I feel for you. You are not alone.

I haven't suffered in the way you have, but a friend of mine has. With friend (about 5' 4") it got to the stage where she was sleeping in a sleeping bag in front of the front door to stop her OH (about 6'2") going out in the evening or night.
Well, obviously, that arrangement can't carry on for long. Eventually - about 10 days/nights - she was shattered, and then persuaded by one of her daughters, who was appalled at the situation, and her bruised arms !, that crisis time had arrived.
The LA Adult Social Services do not take pro-active action unless they are told there is a crisis and carer cannot go any more, won't go on any more, etc - a shame, but a real fuss has to be made, it seems, to galvanise them to take steps - usually on the grounds that the PWD is a danger to themselves and/or others.
Friend's OH now in care home that can cope. A care home has day staff, night staff etc. The system cannot expect a carer, however dedicated (or misguided) to do 24/7 for v long without the carer becoming a patient.

Don't carry on until you're a patient. You have a life too. Look after it, however painful such decisions regarding OH are. Sometimes, the wandering is just a phase that passes, but you never know ..

Best wishes, and a hug.

 

[JaxG]

You are right @Chizz , it's a sorry state of affairs and an indictment of our social care system.

 

[jac69]

Sending you big hugs I really know what you are going through. Last month I gave up arguing with my husband or trying to convince him not to go out walking at midnight dressed head to toe in black, I let him go out. If he is in danger the social work dept can take him away for his own safety. His son and sister live a 2 hour drive away they reported me to the sw dept for mistreating him in summer because he told them I'd hit him and given him a bleed on the brain and he was going in to hospital to have it removed. The truth was he was going for a lumber puncture to get more information on the FTD diagnosis. I was so mad because they never tried to speak to me and they have very little contact with my husband. They contacted them a second time saying I was stopping him from phoning them. They are aware of his condition. I asked the social worker why they had not taken him into care isn't that what they do when a vulnerable person is being abused they said they had to investigate the situation. Its what you do with children onto care ask questions later. They said they did not think the accusations were valid. but they listened to the accuser twice and investigated twice. I was so mad at the way I was treated I decided that from now I'm the carer not his wife and that has helped me deal with him . He is a second husband we have only been married 6 years so I don't have a grow up and old together relationship that I had with my late husband I think that's why I can step back and not be emotionally involved any longer. IMHO I think once the person has changed from the loving husband you knew and loved then take a step back and become the carer it's easier to cope

 

[Simon Penn]

Oh, Alz wife! I so feel for you. Your story is so vivid, so graphic and so heart-rending I'm almost alongside you. The gloves cracked me up - the little details of our lives that suddenly are not as they were before are the warp and weft of this terrible disease. They don't know they're doing it - it's the only comfort - as they would never normally have put you through this hell. On the repetitions, it's hard, but just ignore them. I found it almost impossible not to get ratty at first at the repeated questions, but it's just that, unlike for us, their brain doesn't hold the fact you've just given. I found I just tuned out and got used to repeating the information. But my god it's hard; every day it's hard. Someone asked me the other day how often I thought about my beloved wife's AD and I suddenly realised I thought virtually of nothing else, day in day out. No wonder we're all tired. You have a wonderful community here of people who are suffering the consequences of dementia alongside you. That's what we're here for. Stay as strong as you can!