We're coping but I'm overwhelmed

[Rubina]

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.

 

[Mustang66]

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.

I found it very hard to accept the diagnosis, and for me it was all about acceptance, we hadn't even made it to retirement, its life but not as you both envisaged, take advantage of the fact you can get out about, take everyday as it comes

 

[Betenoir71]

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

 

[Mustang66]

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

Great advice I actually worry about becoming unwell x

 

[vannesser]

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 ho was diagnosed Neely 4 years a go with vascala dim I to when your 3 times a week for a few hours a day witch was ok
But this past 2 year as gone down to once a week (I had hear arak last March do to stress 2018 ) but this year husband was put in hospital with chest infection in January came out having problems walking .incontent and been told he as slit Parkinson’s .when I go out he accuses me of having Agee’s and if not back on time threatens to leav even though he not able to walk with out help.

It does spoil the day out when back but if I don’t go out if only a few hours I would have a brack down . My advic is keep going out as long as you can you still need a life even those it may not be the one we plans .i only 61 ho 76.

 

[RosettaT]

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.....

 

[maryjoan]

Great advice I actually worry about becoming unwell x

This is my worry as well. Brought home to me this week when my ex husband became unwell and in hospital( though not seriously). One of my son's came down from Scotland, the other cancelled his holiday to Lanzarote to be with their father - support his now wife, who is able to look after herself, take the dog for a walk etc etc.

If it was me?? How could they support me with my partner who is mid stage dementia but thinks there is nothing wrong. My partners family live 250 miles away. So someone from my side would have to start the ball rolling to get OH help and sorted, as well as being there for me as well..... such a nightmare thought.....

 

[Mustang66]

This is my worry as well. Brought home to me this week when my ex husband became unwell and in hospital( though not seriously). One of my son's came down from Scotland, the other cancelled his holiday to Lanzarote to be with their father - support his now wife, who is able to look after herself, take the dog for a walk etc etc.

If it was me?? How could they support me with my partner who is mid stage dementia but thinks there is nothing wrong. My partners family live 250 miles away. So someone from my side would have to start the ball rolling to get OH help and sorted, as well as being there for me as well..... such a nightmare thought.....

Its more important we are fit & well then anything else, I'm stressing as awaiting a knee replacement, been putting it off because as a carer in no situation to have it done, now I have no choice

 

[Philbo]

I don't think it matters what stage of the "journey" we find ourselves, it's a roller-coaster ride of emotions all the way?

There certainly seems to be more downs than ups and you cannot get off but I guess, as passengers, we just get used to it.

My wife had taken medical retirement due to back problems and I took early retirement at 59, with the intention of doing more travelling, weekends away etc. Within 2 years, my wife was diagnosed with dementia and although we did manage a couple more holidays, her deterioration was enough to make this no longer practicable.

Six years on and she is now in a nursing home (still only 69 next month), immobile and spending much of the time asleep. Although I no longer have to physically care for her, I am finding it hard to deal with the fact that she is no longer at home with me. Handing over her care has also been hard, though the nursing home staff are very good. This will be our first Christmas apart in 48 years.

You will be surprised how adept you become at developing coping strategies (trust me) as you encounter new issues, set-backs etc. As others have said, finding time for yourself is very important, so ignore any pangs of guilt (we all get them) and take care.

Best wishes.
Phil

 

[Olliebeak]

Not selfish at all Rubina. I could have written your post. I am determined to keep my activities going (also walking and seeing friends), and as my husbands condition has deteriorated very slowly he has a routine which he is comfortable with which enables me to leave him at home for periods. One key part of this is a pad in the kitchen where each day I write down what he needs to remember - always starts with “take tablets” - what is for his lunch, what we are doing, what I am doing, when I will be back etc. As we have done this from day 1 it still works and he refers to it.

As for patience .... if you find a secret way to keep your temper please share it!! I can be so horrible I feel really guilty on a daily basis.

I always say this - everyone says look after you and it’s true.

 

[White Rose]

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.

I echo everything everyone has said Rubina. You're not selfish at all, no one would ask for the life of a carer and I would guess that we all hate it! My partner is 4 years down the line from diagnosis and honestly, though the first couple of years were hard enough, I now look back and wish we could go back to those days when at least we could still have a conversation, I could still go out and leave him, he could still make a coffee and heat up a ready meal, he could still read and keep himself entertained and we could still go on holiday. Find out as much as you can now about carers and what help is available in your area, you're going to need help later. Get the POA in place and wills and all that stuff. If I'd known before how it was going to be there are a lot of things I would do differently.

 

[Thethirdmrsc]

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.

 

[Mustang66]

I echo everything everyone has said Rubina. You're not selfish at all, no one would ask for the life of a carer and I would guess that we all hate it! My partner is 4 years down the line from diagnosis and honestly, though the first couple of years were hard enough, I now look back and wish we could go back to those days when at least we could still have a conversation, I could still go out and leave him, he could still make a coffee and heat up a ready meal, he could still read and keep himself entertained and we could still go on holiday. Find out as much as you can now about carers and what help is available in your area, you're going to need help later. Get the POA in place and wills and all that stuff. If I'd known before how it was going to be there are a lot of things I would do differently.

I echo everything everyone has said Rubina. You're not selfish at all, no one would ask for the life of a carer and I would guess that we all hate it! My partner is 4 years down the line from diagnosis and honestly, though the first couple of years were hard enough, I now look back and wish we could go back to those days when at least we could still have a conversation, I could still go out and leave him, he could still make a coffee and heat up a ready meal, he could still read and keep himself entertained and we could still go on holiday. Find out as much as you can now about carers and what help is available in your area, you're going to need help later. Get the POA in place and wills and all that stuff. If I'd known before how it was going to be there are a lot of things I would do differently.

 

[maryjoan]

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.

I agree totally - there is a side of dementia that is fit for the public gaze, and that is 'living well with dementia' - there is also our side - and that is the truth of it, our side is not fit for the public to know about - they remain in the ignorance of believing that dementia is little more than being forgetful.

There are many many people trying to right this wrong, and until it is righted, I believe that there will never be the help that we, the carers, need in order to continue.......

 

[Mustang66]

I am also 4 years on and in exactly the same place as White Rose, I had a great GP who advised me to go on family holidays etc & make memories which we did but wish we had done more....to all those people newly diagnosed do as much as you can whilst you are able, last week I was thinking of all the things I miss (not a good idea).. obviously my OH and how he was, our family home, holidays, us as a family group with our grandchildren, these are just a few things, its like a constant grieving for your loved one and your old life, we are only human...somehow you have to reign yourself back to the reality of your life in the here & now.... its what we what we do for love

 

[Mustang66]

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.

Said it just how it is ..….I know its not funny but your quote did make me smile

 

[Mustang66]

I agree totally - there is a side of dementia that is fit for the public gaze, and that is 'living well with dementia' - there is also our side - and that is the truth of it, our side is not fit for the public to know about - they remain in the ignorance of believing that dementia is little more than being forgetful.

There are many many people trying to right this wrong, and until it is righted, I believe that there will never be the help that we, the carers, need in order to continue.......

They go on about the good that's been done to raise dementia awareness, the dementia choir & the awful dementia café has done nothing to educate the public about the real life struggle for us the carers, they now all believe put there favourite music on, job done.... its like we are banging our heads against a brick wall, at a recent meeting I bought up the fact every one should have a support worker & was told to take the issue up with my GP, my GP has no knowledge whatsoever of my husbands type dementia BVFTD, it seems even banded together the ignorance will continue

 

[White Rose]

They go on about the good that's been done to raise dementia awareness, the dementia choir & the awful dementia café has done nothing to educate the public about the real life struggle for us the carers, they now all believe put there favourite music on, job done.... its like we are banging our heads against a brick wall, at a recent meeting I bought up the fact every one should have a support worker & was told to take the issue up with my GP, my GP has no knowledge whatsoever of my husbands type dementia BVFTD, it seems even banded together the ignorance will continue

We have moved house recently - no contact with the new GP so far. I guess I was hopeful that perhaps it was different in other areas but I guess not. At our old medical practice we got his Donepezil regularly, had a meds review probably once a year and that was it, no contact no assigned care worker, nothing. It's like other people on TP say, you have to fight for everything. At the end of my tether after the 'poo gate' incident I was advised to get a Care Needs Assessment and Carers Assessment (thanks to the Alzheimer's Society Helpline). Got to chat to a nice helpful and kind person on the phone and contact details of various organisations but no-one actually comes out to assess the PWD and give any insight into how far down the line we are or where it's heading or just to be there for support. We are so lucky that my partner is self-funding because I absolutely have no idea how carers cope when they have to rely on social services and the council. And @Mustang66 you are absolutely spot on in saying about raising Dementia awareness, people still think it's just a bit of memory loss. Let's have filming of the reality of the situation, such as was shown on BBC News a couple of days ago. I would love them to have seen the poo all over my bathroom, all down my partners legs and the towel he wiped his bottom on (luckily I think that was a reaction to the flu jab and hasn't happened since) but actually I wouldn't want people to see that because it seems unfair to my partner, after all as I keep saying, no-one asks for this horrendous disease and the people who have to live with it need to be treated with decency and respect. But there are areas they could show, like the endless struggle to get them to understand even the simplest of instructions, the mood swings, the swearing and anger, the physical violence that some people have to endure (we don't have that fortunately, yet!), their endless repetitive questions, walking around and around the house, being awake at all hours of the night.......People just need to see it as it is and know that 1 in 3 adults are likely to get Dementia, this is going to be an NHS and social care crisis ..... funding is desperately needed to try and find a cure. It's not just a little bit of memory loss that your gran or grandad used to suffer from, this is a crisis in the making. That's it I'll get off the soapbox now and marzipan the Christmas cake.

 

[jenniferjean]

People just need to see it as it is and know that 1 in 3 adults are likely to get Dementia, this is going to be an NHS and social care crisis ..... funding is desperately needed to try and find a cure. It's not just a little bit of memory loss that your gran or grandad used to suffer from, this is a crisis in the making. That's it I'll get off the soapbox now and marzipan the Christmas cake.

I can't see that the government aren't aware of what Dementia entails or that it could become a NHS and social care crisis - they must be able to see this. I just think that their answer is to just push as much as they can onto family members to cope and then to bury their heads in the sand.

I did my marzipan on Thursday and will ice tomorrow if the supermarket delivery my icing sugar.

 

[White Rose]

I can't see that the government aren't aware of what Dementia entails or that it could become a NHS and social care crisis - they must be able to see this. I just think that their answer is to just push as much as they can onto family members to cope and then to bury their heads in the sand.

I did my marzipan on Thursday and will ice tomorrow if the supermarket delivery my icing sugar.

Yep, typical Govt, maybe we all need to shout louder! It's a pity we can't all get down to 10 Downing and picket outside!!