I am struggling and I know it is going to get so much harder. I would say we are mid stages; can't do paper work, days of the week, month, repetition becoming more and more, circle of friends down to 3 (I know that is good for some men) - repetition "what are we getting the children for Christmas" maybe 30 times over 12 hours, he is lonely, massively depressed (wants to end it all) and this seems to be repeated constantly in what he is saying, asking me questions constantly, it is only ever questions "have you seen my" "How do I" "What are you doing today?" Questions only not a proper converstation any more. I still try and work, I am self employed and need to work mentally and financially as we have 2 children who are university age. It is so hard to describe in words the impact of him on our daily lives, I feel guilty constantly as I just can't make him happy, I am totally worn down by him, I am known for being bubbly and upbeat but I am ageing by the day, I am lonely, not depressed, yet, but don't think I am far off, and part of me wants to run far, far away. I have hated coming home from being out for years, he is always there, I am never at home alone, home is not home. We sleep separately now as I can't handle the night terrors (and kicking that can come with that), the anxiety. Anxiety is one of the worst parts, he feels useless, but it is totally overwhelming to be around. I feel selfish having strong feelings of "this is so damn hard", I feel lonely, I don't know how to do this. I do however have an appointment with the memory clinic this week and I have it in my head to almost lay a bit of law down saying "Help" please, I cannot be the only one dealing with his mental health every single day, it is destroying me, it is affecting my child and other children.
I want to run away every day.
- Thread starter ZZ
- Start date
I am so sorry to read of how you are struggling. My husband is very similar to yours and I completely identify with what you say. Like you, every day its the same questions over and over, and each day I feel as though I'm losing the person I used to be. I get very emotional.
Sadly there are no "golden nugget" solutions however there are some practical things you might like to consider, if you haven't already:
A year ago I started having carers and that has made a difference. It takes effort initially to get this up and running (I have done it through social services) but the effort is worthwhile. I explained how I felt as though I was in melt down, not able to cope with everything. They are likely to offer you an hour here and there to get the shopping done to which I said that wasn't enough. I needed to have "me" time as well, otherwise I would go under.
We applied and got attendance allowance (higher rate) and this covers most of the carer cost.
I have received counselling from the memory team, and I've found this hugely helpful, especially around feelings of guilt and coping mechanisms.
I have a cleaner every other week so I don't have to worry about the house. Not that I am house proud, I just never seemed to have time to get it done.
Our circle of friends is now also very small, but they are willing to help. If you friends are able to help, see if they can have some regular time with your OH so you get a break.
POA is in place.
Our wills are sorted.
None of these things either on their own or together fix the problem but they do help. Quite frankly I feel like running away. I am no longer a wife, I am a carer and this is definitely not one of my gifts. The man I married has virtually gone, and it's hard living this life. I don't post very much here but immediately felt your pain and wanted to respond. There are wise, experienced and caring people here so keep reading and posting.
I hope you have a good day today xx
Sadly there are no "golden nugget" solutions however there are some practical things you might like to consider, if you haven't already:
A year ago I started having carers and that has made a difference. It takes effort initially to get this up and running (I have done it through social services) but the effort is worthwhile. I explained how I felt as though I was in melt down, not able to cope with everything. They are likely to offer you an hour here and there to get the shopping done to which I said that wasn't enough. I needed to have "me" time as well, otherwise I would go under.
We applied and got attendance allowance (higher rate) and this covers most of the carer cost.
I have received counselling from the memory team, and I've found this hugely helpful, especially around feelings of guilt and coping mechanisms.
I have a cleaner every other week so I don't have to worry about the house. Not that I am house proud, I just never seemed to have time to get it done.
Our circle of friends is now also very small, but they are willing to help. If you friends are able to help, see if they can have some regular time with your OH so you get a break.
POA is in place.
Our wills are sorted.
None of these things either on their own or together fix the problem but they do help. Quite frankly I feel like running away. I am no longer a wife, I am a carer and this is definitely not one of my gifts. The man I married has virtually gone, and it's hard living this life. I don't post very much here but immediately felt your pain and wanted to respond. There are wise, experienced and caring people here so keep reading and posting.
I hope you have a good day today xx
@CG I’m so sorry you’re going through this, and people on here totally get the “this is so damn hard” feeling, because it IS damn hard! Ditto the feeling of wanting to run away.
It sounds like you’re doing this alone. Definitely tell the Memory Clinic you need help for your husband. Tell them everything you want them to do (don’t wait for them to offer!). He might benefit from medication for his anxiety and depression. Also see if you can get some carers in, to help you. I think with work and children and hubby’s dementia you have far too much on your plate.
Don’t wait until you have carer breakdown, get help asap. I don’t know whereabouts you are, but the Alzheimer Society UK helpline is very knowledgeable about what you’re entitled to in what area. The number is 0333 150 3456
Best wishes to you both. Keep posting here too, it helps to get it all out. xx
It sounds like you’re doing this alone. Definitely tell the Memory Clinic you need help for your husband. Tell them everything you want them to do (don’t wait for them to offer!). He might benefit from medication for his anxiety and depression. Also see if you can get some carers in, to help you. I think with work and children and hubby’s dementia you have far too much on your plate.
Don’t wait until you have carer breakdown, get help asap. I don’t know whereabouts you are, but the Alzheimer Society UK helpline is very knowledgeable about what you’re entitled to in what area. The number is 0333 150 3456
Best wishes to you both. Keep posting here too, it helps to get it all out. xx
Yes, do do this. No-one is going to offer any help unless you ask for it. Then take anything that you are offered, even if you think it wont help - you may find it does and if it doesnt you can discontinue, but at least you would have tried it.
Something that may help your husband is ant depressants/anti-anxiety meds, which the memory clinic can definitely help with.
xx
I am so sorry that you are going through this. Many of us have been or still are in your position and cannot see anyway out. You have so much to deal with but there was one thing you said that I would like to mention.
You said that you feel guilty that you can’t make him happy. Firstly, none of this is your fault. The disease was not something you did or didn’t do and that is something you need to ditch. Trying to carry a burden of guilt along with everything else is not helpful to you or anyone that is being impacted by your husband’s illness.
Secondly, you can only keep him safe and comfortable. You cannot make him happy and blaming yourself for how this disease is affecting your husband is rather like trying to turn back the tide with your big toe. The disease is in control, not you. You can only do your best and it seems to me that you are being a super carer.
You said that you feel guilty that you can’t make him happy. Firstly, none of this is your fault. The disease was not something you did or didn’t do and that is something you need to ditch. Trying to carry a burden of guilt along with everything else is not helpful to you or anyone that is being impacted by your husband’s illness.
Secondly, you can only keep him safe and comfortable. You cannot make him happy and blaming yourself for how this disease is affecting your husband is rather like trying to turn back the tide with your big toe. The disease is in control, not you. You can only do your best and it seems to me that you are being a super carer.
You must get time off. That means having carers take over, possibly for a full day over 16 hours, so you can go out, maybe work at another location, socialise in the evening. You need to protect your work so is there a hot desking venue nearby you could use to work? Can OH be left alone? Obviously you will arrange what suits you best but it has to involve someone else doing the care for part of the week.
You sound like you are at carer breakdown stage, and you must reach out, to your GP, social services or the mental health team. It is hard, and there is no help unless you ask, which is also hard to do. When you are in the storm, you can’t see anything, and you have to slowly extricate yourself, or this disease will take both of you. Good luck.
Dear CG I really feel your pain! My OH similar and yet making the move to having carers in seems hard to sell to him yet. He thinks he is fine. I try to get his family involved but they are not local and busy with their own lives. OH has pushed all his friends away and relies totally on me for everything- friend, PA, shopper, cook, etc. I can still get out in the day for a few hours but he is worse in the evenings- especially imagining I am going out to have sex with young men ?
I feel so trapped- how can I ever leave? I can only hope that something changes to make me feel better about it all - can’t imagine what tho. Sending love x
I feel so trapped- how can I ever leave? I can only hope that something changes to make me feel better about it all - can’t imagine what tho. Sending love x
Hi. I don't have a partner with dementia but a father. Some of this I recognize. The repetition , feeling depressed etc. This is enough to drive you crazy. Dad is 88 and immobile. He has carers in 4 X a day .He has VD. He won't go to day care etc and most of the days he sleeps. Would your other half go to day care? Could you get a sitter for a couple of hours to give you a break?
@sapphire turner Tell him the carers are for you (bad back or any other suitable reason why you need help) or that Social Services are saying you must have them. Anything that’s plausible that he might believe.
The PWD feels vulnerable and frightened and will latch onto the closest person they trust and rely on them for everything, if they can. You must get some help, no one person can do this alone until the end. Have you had any contact with Social Worker or Memory Clinic or any kind of helpful charity like Admiral Nurses or Alzheimer’s Society? Or had a needs assessment?
@sapphire turner - perhaps you could start off with someone to help you with housework? I have a lady from AgeUK Help at Home scheme who comes in every week. She is much more that a cleaner - she helps me clean the house, do laundry and would do shopping etc too, although she would not sit with OH while I went out. When I reached carer breakdown it was she who found me and alerted everyone. It was a really good introduction for OH to get used to someone else coming into the house. If you dont think your husband would accept personal care from a carer, you could try a befriending service - several charities will do this (including AgeUK and TuVida) - find out what is in your area.
It's pretty much the same here with me and my Mum. Mum has all the symptoms you described in your OH. She expects me to sit at her kitchen table all day every day, while we talk about absolutely nothing -- because she's no longer capable of carrying on an actual conversation. It's just repetitive questions, demands that I do this and that for her, and paranoid moans and groans about the neighbors.
I think all the time about running away to another country. (of course, I wouldn't do it) A difference between you and me -- I've struggled with fatigue and depression for most of my life. Those depression symptoms were mostly under control until I became a caregiver. Now I'm burnt out, seriously depressed, anxious and experiencing nightmares most nights.
It seems I can't get in home help without it costing more than we can afford and Mum's probably too paranoid to allow it. To help alleviate the loneliness and boredom, I read 2 caregiver forums, plus books on Dementia regularly. Also, I hope to get an appointment for myself soon with a mental health professional. Mum is quite literally driving me crazy.
Thank you so much for this reply. I am going to read them all again tomorrow, but just writing this today was a good day. I have escaped to my mums (who I also care for but who is easier than my husband) and I feel lighter having spoken to a few people today about help. I think hearing what people have been writing about carers meltdown is probably where I am at today, luckily I have a friend who is a doctor who is keeping an eye on me too. I think I have worked out that I have reached a point where I need help, where it is ok to ask - it is just when people say to me "Oh I stopped him in the street and had a lovely chat with him, you wouldn't know ..." and I am thinking "dear god, you have no idea what he is like behind the closed door". Even my step son has said to me we must get help now, he knows, he understands, he doesn't know how I have lasted so long, so maybe it is a case of hitting rock bottom to start finding other resolutions. I am clinging onto this memory appointment this week. Thank you all so much for your time answering my post.
Thank you so much for ALL YOUR REPLIES. I am going to read them all again tomorrow, but just writing this today was a good day. I have escaped to my mums (who I also care for but who is easier than my husband) and I feel lighter having spoken to a few people today about help. I think hearing what people have been writing about carers meltdown is probably where I am at today, luckily I have a friend who is a doctor who is keeping an eye on me too. I think I have worked out that I have reached a point where I need help, where it is ok to ask - it is just when people say to me "Oh I stopped him in the street and had a lovely chat with him, you wouldn't know ..." and I am thinking "dear god, you have no idea what he is like behind the closed door". Even my step son has said to me we must get help now, he knows, he understands, he doesn't know how I have lasted so long, so maybe it is a case of hitting rock bottom to start finding other resolutions. I am clinging onto this memory appointment this week. Thank you all so much for your time answering my post.
I could have written this myself - "hard to sell" totally - however, due to feeling near to rock bottom I think I am just almost going to have to say "if you don't, it might be mean that has a breakdown". The other part "He thinks he is fine" - my husband has NO IDEA of the impact on me and my daughter, (we are the ones at home) none at all, and when I have made the error of trying to explain (I won't be doing that again) he says emotional things like "but I am a good man, I am a kind person" - he doesn't see his severe depression which is on an althz loop too, doesn't think it is that bad even though he cries every day or just stares into thin air. "sex with young men ... well, we'll leave that one there, but there is no harm in dreaming!" Thank you so much for taking the time to reply. It is very helpful.
I really hope you get some support too, this sounds so very hard, thank you so much for replying to me when you are clearly needing a lot of support too, it is much appreciated.
Such great advice and this "carer breakdown" really is close to what I am feeling I think, stress is defo a new word in my vocab, never had it before but stress, overwhelm, gasping for breath are all things I feel. I shall read all this tomorrow and note down the great pieces of advice, thank you so much.
I think every single person on here will recognise this. It is known on here as "Host Mode", or sometimes "Showtiming" and it is the most irritating phenomenon known. When someone with dementia meets someone that they dont see very often, especially relatives and authority figures (doctors, nurses, police etc) they can suppress their dementia symptoms. It takes a lot of effort (so they are tired afterwards) and cant do it for long, but just long enough for the person to say "oh they are not too bad at all" and think that you are exaggerating it all. Then they go away away and you are picking up the pieces of a person with dementia who is tired, extra confused and grumpy.........
It can fool a lot of people - even medical staff who should know better.
It sounds to me like you are at the point of needing to put your husband into regular respite care. Not an easy decision emotionally or where to go, you seem to need more than just a few hours break. You will feel guilt for all kinds of things but if you don't look after yourself now you may need looking after yourself very soon.
I hope you find what you need quickly.
I hope you find what you need quickly.
Yes! I constantly feel like I am being gaslighted- he seems fine to me, my husband is the same…. Grumpy old man syndrome…. No it’s not! You have no idea
