We're coping but I'm overwhelmed

[Aitch5]

My partner has just been diagnosed. Once the diagnosis was made, and it was decided that aricept was not suitable, we have more or less been left to get on with it. My partner’s coping mechanism is to narrow down his life, no social events, life revolving round his home and garden and of course,me. He is exhausted at night, and cannot stay awake past 8 pm. We try so hard to concentrate on the things he can do, and to take pleasure in the small things in life. All that sounds good, we’re coping, I tell people. I constantly tell him how well he is doing.
But truthfully, I am overwhelmed. Reading the posts here, I realise we are at the early stage, although we can have chaotic, frustrating days, I can still get for my walks, meet my friends etc. I hope I manage to be kind and patient, but this is not what I thought retirement would be. Is that selfish? I feel so sad for us, and tears are never far away.

 

[Aitch5]

Hi Rubina I like you I’m at the beginning of Alzhemers with my husband, he is 67 and we have been married almost 2 years.
I get impatient and feel so guilty about it, I think it’s because I’m out of my depth and feel so alone. Every day is planned around my husbands condition and capabilities and it is so overwhelming. I do find reading the forums comforting but also daunting as it’s like reading our future, I want to be there for my husband but also want to stand up and be counted myself with my needs and feelings taken into account, but I feel I can’t rock the boat or argue as this is where the guilt comes in.

 

[Aitch5]

Absolutely normal feelings I would say, I doubt anyone here hasn't felt the way you do at times. I know I did.
I just couldn't believe that after looking after mum with dementia for 20yrs that within 12 months of losing her my OH was diagnosed. I hit a downward spiral. Disbelief, anger, why us, disappointment, overwhelming feeling of unfairness, depression.

Then one morning i woke up and I just knew I had to take control. I concentrated on the wonderful times we had already had, the laughter, the fun, the fact that I was so lucky my wonderful husband had chosen to spend his life with me, whatever that brought with it and that my life would have been much poorer without him in it.

Now I look for something every day that he does to make me smile. It might be the fact that he asked for a sandwich, or he looked at me just like he used to, or he laughed when I cracked a joke. Mundane things by normal standards but to me worth my weight in gold. The other day we passed a cafe and he suggested we stop for a drink, that absolutely made my day. One of hardest things I find is making all the decisions and constantly thinking for two.

I know it's hard and you never know how things will pan out but TP is here for you, we all understand.

sending you hugs.....

 

[Aitch5]

I feel I could cope and take control if I didn’t get so hurt all the time by my OH lack of affection towards me, I know it’s not his fault so why does it hurt so much and feel so personal

 

[Thethirdmrsc]

Spot on @White Rose and thank you @Mustang66! The anger side of this disease is one I didn’t expect, and that just does me in. My daughter gave me flowers today to cheer me up which was really nice. I think he needs something other than the night pill, although he takes Galantamine during the day, I think something for the anger/depression/mood swing is called for. It’s like being a single parent to a 14 stone toddler. Last week I caught him wiping the bathroom floor, after he missed the loo, with my face cloth having to hide it now. Got to laugh, cause it’s lonely sitting on the bed having a wee bubble.

 

[Mustang66]

Spot on @White Rose and thank you @Mustang66! The anger side of this disease is one I didn’t expect, and that just does me in. My daughter gave me flowers today to cheer me up which was really nice. I think he needs something other than the night pill, although he takes Galantamine during the day, I think something for the anger/depression/mood swing is called for. It’s like being a single parent to a 14 stone toddler. Last week I caught him wiping the bathroom floor, after he missed the loo, with my face cloth having to hide it now. Got to laugh, cause it’s lonely sitting on the bed having a wee bubble.

 

[Mustang66]

They know we will all carry on caring regardless, give us support and we an do it even longer, government will benefit in the long run, carers allowance £66.15 place in home care £1000 per week, we save government thousands

Sorry no cake to marzipan, don't like marzipan or cooking at all for that matter

 

[jenniferjean]

I get impatient and feel so guilty about it, I think it’s because I’m out of my depth and feel so alone. Every day is planned around my husbands condition and capabilities and it is so overwhelming. I do find reading the forums comforting but also daunting as it’s like reading our future, I want to be there for my husband but also want to stand up and be counted myself with my needs and feelings taken into account, but I feel I can’t rock the boat or argue as this is where the guilt comes in.

Don't feel guilty, it's understandable to get impatient. It's not easy to deal with. Just remember you're doing a good job. And you're not alone, we're all here.
As for reading the forum you must realise that all cases can be different. Not everything you read is the same in all cases. Take each day as it comes and make sure you get as much help as you can.

 

[Delilah63]

I would like to know who “lives well with dementia”, cause it’s not me. Today in town, my OH demanded I stop the car, and he would walk home, ( it’s only 32 miles), my god I was tempted. There was a little girl, who had a little curl, right in the middle of her forehead. When she was good, she was very very good, but when she was bad she was horrid. This is my OH, and my life sucks.

 

[Rubina]

Can I just thank all the people who found the time to reply to my first post. What a brave, gutsy, group of people. I so agree that dementia has a ‘ public face’ and a private one that can resemble a living nightmare. It really helps to know you are not alone. Wishing you all good health, and hope that during the festive period you get a wee glimmer of humour and affection from your loved one, or at the very least some family/ friends to share the load.

 

[dancer12]

My partner has just been diagnosed. Once the diagnosis was made, and it was decided that aricept was not suitable, we have more or less been left to get on with it. My partner’s coping mechanism is to narrow down his life, no social events, life revolving round his home and garden and of course,me. He is exhausted at night, and cannot stay awake past 8 pm. We try so hard to concentrate on the things he can do, and to take pleasure in the small things in life. All that sounds good, we’re coping, I tell people. I constantly tell him how well he is doing.
But truthfully, I am overwhelmed. Reading the posts here, I realise we are at the early stage, although we can have chaotic, frustrating days, I can still get for my walks, meet my friends etc. I hope I manage to be kind and patient, but this is not what I thought retirement would be. Is that selfish? I feel so sad for us, and tears are never far away.

Hi Rubina:

No you are not selfish, don't ever think that way. This is a cruel illness, it not only takes the person having it but it takes the spouses, families, friends, acquaintances and turns their lives upside down. Let the tears flow, let them flow forever and a day. It's never good to keep anything inside. So cry whenever you feel the need. It seems that the more help we get the more we need. Cherish each other, enjoy the small things in life and try to laugh together. It relieves the stress AND BY ALL MEANS TAKE CARE OF YOURSELF

 

[Northenbabe]

My partner has just been diagnosed. Once the diagnosis was made, and it was decided that aricept was not suitable, we have more or less been left to get on with it. My partner’s coping mechanism is to narrow down his life, no social events, life revolving round his home and garden and of course,me. He is exhausted at night, and cannot stay awake past 8 pm. We try so hard to concentrate on the things he can do, and to take pleasure in the small things in life. All that sounds good, we’re coping, I tell people. I constantly tell him how well he is doing.
But truthfully, I am overwhelmed. Reading the posts here, I realise we are at the early stage, although we can have chaotic, frustrating days, I can still get for my walks, meet my friends etc. I hope I manage to be kind and patient, but this is not what I thought retirement would be. Is that selfish? I feel so sad for us, and tears are never far away.

My husband was diagnosed 3 months ago but we. Have been fighting for a diagnosis for nearly 18 months and I can relate to your post
I am constantly fighting the tears and flip between practice mode and a sense of anger
My husband is only 62 and I’m 56 and in feb I’m having to retire to care for him
We are now at a stage where he just can’t be left his anxiety is so acute
He follows me to the toilet kitchen everywhere !
I know he can’t help it but I’m exhausted
This morning we were up early he was so upset anxious he was hitting his head crying saying he is frightened
No one tells you what to expect or how to manage
The hardest bit is not knowing what is coming next or when how long it will last

 

[nellbelles]

Hello @Northenbabe and welcome to DTP
I’m sorry you have found it necessary to retire early I hope you have contacted SS for a needs assessment for your husband and a carers assessment for yourself it’s a hard road to travel without help..
Now you have found the forum I hope you will continue to post

 

[White Rose]

My husband was diagnosed 3 months ago but we. Have been fighting for a diagnosis for nearly 18 months and I can relate to your post
I am constantly fighting the tears and flip between practice mode and a sense of anger
My husband is only 62 and I’m 56 and in feb I’m having to retire to care for him
We are now at a stage where he just can’t be left his anxiety is so acute
He follows me to the toilet kitchen everywhere !
I know he can’t help it but I’m exhausted
This morning we were up early he was so upset anxious he was hitting his head crying saying he is frightened
No one tells you what to expect or how to manage
The hardest bit is not knowing what is coming next or when how long it will last

Hello Northenbabe, many will relate to this, so many of us have been through it or going through it and I can't count the number of times I've thought or said I just wish I knew what to expect next or how long it will last. It feels like steep stairs going down, it might plateau for a while to give you a little breather but the another step down comes and again you have to try and adjust. I'm the same age as you and it is exhausting, mentally and physically, I can only feel massive sympathy for those so much older who have to care for a PWD, life is incredibly unfair!

 

[Thethirdmrsc]

Hi @Northenbabe, so sorry that you are going through this. I am 60 and my OH is 80, and tears, anger, frustration and disappointment are daily. My aim next year though is to toughen myself up. Sobbing into a towel on the back of the bathroom door at 9pm on Christmas Day is just not on, and he probably used it to mop up the wee on the floor.

 

[Mustang66]

My husband was diagnosed 3 months ago but we. Have been fighting for a diagnosis for nearly 18 months and I can relate to your post
I am constantly fighting the tears and flip between practice mode and a sense of anger
My husband is only 62 and I’m 56 and in feb I’m having to retire to care for him
We are now at a stage where he just can’t be left his anxiety is so acute
He follows me to the toilet kitchen everywhere !
I know he can’t help it but I’m exhausted
This morning we were up early he was so upset anxious he was hitting his head crying saying he is frightened
No one tells you what to expect or how to manage
The hardest bit is not knowing what is coming next or when how long it will last

Husband diagnosed with BV FTD, I found the early days after diagnosis really tough, there are so many emotions to deal with,anger, upset, distress, the attitude of others etc., for me the angst went with acceptance I was 58 husband 60 married for over 40 years, we both could no longer work. We are four years in & It feels like a constant grieving for the man you once knew and the life you both once had. I make every decision for us & have taken on every role, including DIY!. We have downsized due to not having salaries, but it seems things that you thought meant a lot no longer seem to matter. Everyone should have access at time of diagnosis to a specialist support worker, so they can give the knowledge and strength to guide you through, because this is what we all need, I try not to dwell on what's coming next, I am learning on the job everyday, is he on medication for anxiety? I can feel your pain because I am with you, somehow you find the strength but we are all only human

 

[jenniferjean]

My husband was diagnosed 3 months ago but we. Have been fighting for a diagnosis for nearly 18 months and I can relate to your post
I am constantly fighting the tears and flip between practice mode and a sense of anger
My husband is only 62 and I’m 56 and in feb I’m having to retire to care for him
We are now at a stage where he just can’t be left his anxiety is so acute
He follows me to the toilet kitchen everywhere !
I know he can’t help it but I’m exhausted
This morning we were up early he was so upset anxious he was hitting his head crying saying he is frightened
No one tells you what to expect or how to manage
The hardest bit is not knowing what is coming next or when how long it will last

I'm sorry you are suffering this way, it is exhausting and very frustrating. It's hard to understand what they (PWD) are feeling. I've tried but I can't imagine it. Here on TP there are a lot of people who can help with good advice. Keep posting.

 

[jenniferjean]

Sobbing into a towel on the back of the bathroom door at 9pm on Christmas Day is just not on, and he probably used it to mop up the wee on the floor.

I have different coloured towels in my bathroom and people coming to the house are advised not to use the yellow ones.

 

[JBee0827]

My partner has just been diagnosed. Once the diagnosis was made, and it was decided that aricept was not suitable, we have more or less been left to get on with it. My partner’s coping mechanism is to narrow down his life, no social events, life revolving round his home and garden and of course,me. He is exhausted at night, and cannot stay awake past 8 pm. We try so hard to concentrate on the things he can do, and to take pleasure in the small things in life. All that sounds good, we’re coping, I tell people. I constantly tell him how well he is doing.
But truthfully, I am overwhelmed. Reading the posts here, I realise we are at the early stage, although we can have chaotic, frustrating days, I can still get for my walks, meet my friends etc. I hope I manage to be kind and patient, but this is not what I thought retirement would be. Is that selfish? I feel so sad for us, and tears are never far away.

Hi Rubina, like you my husband was recently diagnosed. I guess he too is in early stages, like your partner. Christmas was bittersweet, trying so hard to enjoy the moment, while trying not to look ahead and our uncertain future. Last christmas we had no diagnosis, this year we do and next year, who knows where we'll be. In recognition of this, I did my best to make it as 'normal' as possible.
We have good days and not so good days, emotionally and memory wise.

One thing that helped me was reading that feelings remain, when words fail. So I hang on to the feelings we still share. Also I found myself diverting my thinking the other day, by concentrating on what we/he still enjoy, rather that what he/we can still do and doing as much of that as possible.

Your partner is likely to he feeling shell shocked, afraid and anxious. A natural reaction would be to hibernate while it all sinks in. Give him time, try to provide some cheer with small gestures and distractions. Best wishes Julie xx

 

[Janeysback]

It’s not selfish, but I admit I constantly feel like that. Everyone is entitled to a fulfilling life, but this is hard when caring for a PWD. I care for my mum, I have no social life, my mum gets anxious if I go upstairs for a shower, I have full responsibility for the shopping, but get accused of “abandoning” her for hours (it’s usually a very short time). It’s more stressful at Christmas because there is so much to do when you have to do all the cooking, cleaning, buying all the presents, sending all the cards, if I had a family (ie my own children), maybe less would be expected of me.
I am aware I am ranting, I guess the message I want to give you is please look after yourself, as 1) you are important too and 2) you won’t be any use to anyone if you are do frazzled you can’t function or think straight.
Love and best wishes, xx

I feel your pain and exhaustion, I hope you have managed to find some time for yourself. Just know you are doing a wonderful thing for your mum even if she doesn’t always realise it. xx