effects on your own life?

[father ted]

I can only reiterate what love.dad.but said.
It is so important to make some time for yourself.

I am a carer twice over for my disabled daughter of 27 and my Mum of 92 who has dementia. When my Mum was first diagnosed she came to live with us. I admit I was naive when I thought that whilst I was caring for one another one would not make a difference and for 7 years it didn't but at Christmas I reluctantly decided to move Mum into a care home. Factor in that my Mum's mental abilities declined, my daughters physical abilities have declined and I am 8 years older I was on my knees and something had to give.
It's so hard to deal with but at my age now I am married, I have children, I have travelled a bit and I console myself with the fact that I am only dealing with what many of my age cope with.
Yes I still want more travelling but with Mum now being well looked after in the care home I am a little freer to achieve that even though it involves planning it with military precision because my wheelchair dependent daughter accompanies me but I want to make memories for her and me before I am too old to do it.

You are much younger and deserve far more. I am not sure how you can achieve it but try even in a little way, to get a break and have regular things to look forward to. If you don't you will quite naturally be prone to gettting resentful and depressed and it's very hard to carry on in that frame of mind. My best wishes to you.

 

[NorthBankDave]

It's had a huge effect on my life. What I long for is freedom and travel.I dream (quite literally!) of being in my beloved Wales and walking among the hills and sitting by the ocean. Bliss!

I used to go to concerts a lot and that has ground to a shuddering halt. In the last 15 months I've been out once in the evening so its pretty lonely and isolating. I miss simple things really, like being able to watch television or listen to music, do yoga or go out with friends.

I'm thankful that I'm still able to go to work and can still study (just) for my OU degree as between them they keep my sanity!

 

[Pickles53]

Please all of you...dementia takes one quality of life away...don't let it take Two.
Try and find a way of fitting into your care a bit of me time to do something you want to do. I know from caring for dad it does take its toll but your parents, partners, pwd...if they were able would probably say you need a bit of time to yourselves to enjoy a bit of your life. It is easier said than done I know...but looking back I wish I had not let it consume all of my waking days and nights to the extent of carer breakdown.

Could not agree more. I know it’s far from easy to put yourself first when you’re a carer but please try. Sometimes the person you care for will have to accept something that they don’t like eg a professional carer instead of you. We all have to accept things we don’t like, that’s just normal life. If the main carer ends up with carers’ breakdown because they never have a break and can’t continue, the caree will have to cope with a situation they like even less.

 

[Duggies-girl]

It's had a huge effect on my life. What I long for is freedom and travel.I dream (quite literally!) of being in my beloved Wales and walking among the hills and sitting by the ocean. Bliss!

I used to go to concerts a lot and that has ground to a shuddering halt. In the last 15 months I've been out once in the evening so its pretty lonely and isolating. I miss simple things really, like being able to watch television or listen to music, do yoga or go out with friends.

I'm thankful that I'm still able to go to work and can still study (just) for my OU degree as between them they keep my sanity!

Agree with that @NorthBankDave I believe that the OU has saved my sanity. TMA's are a godsend. I should finish my degree in June but my results have suffered badly over the last couple of modules probably due to dads decline but I am determined to finish even if i end up with low grade.

On a brighter note I have just discovered that student loans are available for second degrees so I can do another one.

 

[Raggedrobin]

Duggies girl, thanks for your encouragement re travelling. And yes, I think studying is the other thing I want to go back to. In fact I almost started an art degree this year but as my Mum is really on the last lap I am glad I didn't. So gap year first for me, then studying.
Are you sure about getting a student loan for a second degree? I looked into it and couldn't get it for the art course (which is another thing that made me deliberate, the cost is mad now!)

 

[Duggies-girl]

Duggies girl, thanks for your encouragement re travelling. And yes, I think studying is the other thing I want to go back to. In fact I almost started an art degree this year but as my Mum is really on the last lap I am glad I didn't. So gap year first for me, then studying.
Are you sure about getting a student loan for a second degree? I looked into it and couldn't get it for the art course (which is another thing that made me deliberate, the cost is mad now!)

Yes with the OU It surprised me. It is only for certain degrees STEM (Science, Technology, Engineering and Maths is one where you can sort of pick your own modules. I am on an open degree but it is mostly Geology based with a bit of astronomy in there. This is the link, there are a lot of choices.

http://www.open.ac.uk/courses/fees-and-funding/equivalent-qualifications

I said that I am worried about not finishing this degree but I will finish it probably with a lower grade than I would have liked but can't be helped. I am only doing for my own satisfaction. It's not going to get me a good job at my age 61 so never mind. To be honest I am dreading finishing it because it is the only thing keeping me sane at the moment, well that and my lovely son but hey ho it seems that I can do another one and I will. It all depends on dad really and how long he lasts so gap year or another degree, whichever comes first. I am thinking STEM make my own up again or maybe Environmental Science could be good. A student loan would suit me as I will never earn enough to even start paying it back.

 

[Raggedrobin]

Wow that is really interesting and encouraging. Even more so for my partner. He dropped out of a science degree some years ago and he talked about doing one but thought it would be too costly. Yes, neither of us would ever earn enough to pay it back. I am surprised. No use to me with an art degree but nevermind, what does STEM stand for, by the way?

I am a courseaholic. I love learning so much and have done all sorts of courses. I joined a stained glass course during the time I have been here. made a few windows for my house but also the group were so lovely and supportive of my situation that I got a lot out of just being with them for a couple fo hours, once a week.

On another note, I have some friends in the USA who have just asked if, when the time comes for our GAP year, we would like to house swap with them. Sounds a great idea to me, and means the first part of our trip is kind of sorted out, we can have a base camp there.

 

[Duggies-girl]

Wow that is really interesting and encouraging. Even more so for my partner. He dropped out of a science degree some years ago and he talked about doing one but thought it would be too costly. Yes, neither of us would ever earn enough to pay it back. I am surprised. No use to me with an art degree but nevermind, what does STEM stand for, by the way?

I am a courseaholic. I love learning so much and have done all sorts of courses. I joined a stained glass course during the time I have been here. made a few windows for my house but also the group were so lovely and supportive of my situation that I got a lot out of just being with them for a couple fo hours, once a week.

On another note, I have some friends in the USA who have just asked if, when the time comes for our GAP year, we would like to house swap with them. Sounds a great idea to me, and means the first part of our trip is kind of sorted out, we can have a base camp there.

STEM (Science, Technology, Engineering and Maths No i did not see any Art degrees in there but I think you can more or less pick your modules with STEM I love this learning and would have liked a bit of history but I can't afford to pay full whack so I will probably go for another Science degree. I was surprised about the loans being available too and if the OU have them I am sure other universities must too.

The house in the USA would be amazing. They have so many wonderful places to see. Yellowstone is on my list along with lots of others. If you had a year you could take in loads even Canada.

 

[Amber_31]

This thread is very encouraging to read. My utter fatigue with being a carer doesn’t come from the mundanity of caring for another person’s personal needs, it’s the behaviour and emotions particular to a person with dementia. In the past week I’ve had a crying phone call from the carer whilst I was about to go into a work meeting, saying my mum had run off when the decorator left and she had called the police. More attempts to run off, then on friday she did run off, sparking an 8 hour missing person hunt with an added helicopter flying over our local forest area. All with impending snow. I barely had a moment to catch my breath, before the next episode.
And I’m all of this, I’m struggling to do 2 hours of desk work per day as it’s my salvation! It makes me feel very energised to know that I’m retaining some of my old, professional, non haggard identity.
But part of me feels in all of this, whilst I am crushed I am getting stronger and more resilient as time goes on, and less swept under by what goes on under my roof.

 

[Duggies-girl]

This thread is very encouraging to read. My utter fatigue with being a carer doesn’t come from the mundanity of caring for another person’s personal needs, it’s the behaviour and emotions particular to a person with dementia. In the past week I’ve had a crying phone call from the carer whilst I was about to go into a work meeting, saying my mum had run off when the decorator left and she had called the police. More attempts to run off, then on friday she did run off, sparking an 8 hour missing person hunt with an added helicopter flying over our local forest area. All with impending snow. I barely had a moment to catch my breath, before the next episode.
And I’m all of this, I’m struggling to do 2 hours of desk work per day as it’s my salvation! It makes me feel very energised to know that I’m retaining some of my old, professional, non haggard identity.
But part of me feels in all of this, whilst I am crushed I am getting stronger and more resilient as time goes on, and less swept under by what goes on under my roof.

Oh my goodness, you have a lot on your plate. I don't know how we cope but we do somehow and yes we are strong and resilient. We have to be but sometimes it all gets a bit much. Whenever I read a post like yours it makes me grateful of how my dad is. He has retained his kindness and is such a gentleman still but I am so very very sad to see him the way he is, shrunken, fading away yet still smiling and insisting 'don't worry about me I am alright' when he is not. He would sit at home uncomplaining and starve to death if allowed.

Glad you have your work to do, we need our salvation.

 

[Linbrusco]

My husband was diagnosed with a brain tumour 2004. Was not expected to live more than 3-5 yrs. We had two years of surgeries, chemo, radiation, a change of financial situation with both of us having reduced income, and me having to work part time. Two young children also.
DH has Neuro deficits and unable to work in usual occupation, but fortunate to have private disability insurance
All our future plans on hold. DH 14 yrs still doing well, but we are still in limbo. Grateful to have our own home ( altho mortgage) but future plans still limited due to finances.
It was and is still tough.... but yet , so far.... easy in comparison to dementia.

Mum & Dad sold their house 2007, and we built on our land for them, so they could help me with the children.
All good , until Mums health declined from 2011. Chronic Lymphocytic Leukemia, then early stage bowel cancer and then Alzheimers 2013.
Mum went into care 2016.
Alzheimers has been the toughest so far. Mentally & Physically draining.
Plans I had to increase my days at work and income, still on hold for those years Mum was at home. Have recently just added an extra day, as only feel after 20 months of Mum being in care mentally capable.
Now Mum is in hospital with a UTI & delirium. Care Home could not cope due to major aggression, and physical violence.
We hope once hospital sort out Mum with medication etc, she may be able to return.
Dead the prospect of Specialised Hospital dementia Care ( I think like EMI unit in the UK)
This is by far the hardest

Not what I envisioned when I got married and had children... one day at a time

 

[Sam Luvit]

I did an OU degree & miss the escapism of study. I’ve thought about getting back into study, but can’t afford it. I’m going to take a look at maybe starting another degree, purely for interest as I can’t see me looking at gainful employment in 6 years, if I even finished it in that time

It’s funny how you miss the TMA’s lol

 

[Duggies-girl]

I did an OU degree & miss the escapism of study. I’ve thought about getting back into study, but can’t afford it. I’m going to take a look at maybe starting another degree, purely for interest as I can’t see me looking at gainful employment in 6 years, if I even finished it in that time

It’s funny how you miss the TMA’s lol

@Sam Luvit

You can now have a student loan for a second degree with the OU See this link

http://www.open.ac.uk/courses/fees-and-funding/equivalent-qualifications

I finish mine in June (with luck) and I am going to get a loan for a second one. hopefully to start next year. It is only for certain degrees but there is a good choice and you don't repay until you earn 25000 a year or thereabouts. I am 61 so I will never pay it back and I can't imagine a life without a TMA to look forward to. I can completely lose myself in one.

 

[Sam Luvit]

Hi @Duggies-girl

It was seeing the link that made me smile. The chance to study again. Proper pressured study, planning & focus. I’ve done a little course, but it didn’t hold my interest, no pressure lol

My first ever TMA, I didn’t realise it was “open book”, so put all the books away & did it like a proper exam lol. I still passed, but could have done better.

I’m rubbish at exams, so I practiced question & answer over the online while playing an on line game against a friend. It worked, I passed lol

 

[Duggies-girl]

Hi @Duggies-girl

It was seeing the link that made me smile. The chance to study again. Proper pressured study, planning & focus. I’ve done a little course, but it didn’t hold my interest, no pressure lol

My first ever TMA, I didn’t realise it was “open book”, so put all the books away & did it like a proper exam lol. I still passed, but could have done better.

I’m rubbish at exams, so I practiced question & answer over the online while playing an on line game against a friend. It worked, I passed lol

I did one open book exam S276 Geology I had all this books on the floor to look at and the desk was not much bigger than the exam paper. I started well but last year was a scrape through and my worst result ever. I am desperate to finish this year and panicking in case I don't and then again I can't wait to do another one.

Yes it's the pressured study I need which is odd because I already have enough pressure in my life.

 

[Sam Luvit]

I did the first year if the Accounting course, trust me to start in a lol. I go so hooked I went in to do a degree in Business Studies. I loved the study, the other students were supportive & I made friends with like minded people. I’m actually going to meet one this year some 15 years after “meeting” through the OU!

I study & work better under pressure.

 

[Lydiaann]

I have been caring for the past 16 years .First with my mother who had Altzhiemers and then for my husband who started with prostate cancer in 2006 , then for the last 6 years he has been suffering with parkinsons and lewy bodie dementia . My life has been devoted to caring for others , and I sometimes wonder when will it be my turn to have a life ? We have been married for 45 years this June and I can honestly say the last 6 have been the worst . The constant paranoia , anxiety , repeating ,delusions and moods . I am not a very religeous person but find myself praying to God to end not only my husband's misery but mine as well . I want to live , I want to see something of the world other than these 4 walls . It is such a cruel disease that not only robs the life of the patient but also the carer.

 

[smartieplum]

I have been caring for the past 16 years .First with my mother who had Altzhiemers and then for my husband who started with prostate cancer in 2006 , then for the last 6 years he has been suffering with parkinsons and lewy bodie dementia . My life has been devoted to caring for others , and I sometimes wonder when will it be my turn to have a life ? We have been married for 45 years this June and I can honestly say the last 6 have been the worst . The constant paranoia , anxiety , repeating ,delusions and moods . I am not a very religeous person but find myself praying to God to end not only my husband's misery but mine as well . I want to live , I want to see something of the world other than these 4 walls . It is such a cruel disease that not only robs the life of the patient but also the carer.

You wonder how you get the strength to go on. And I bet you're told, "oh you're coping so well".

 

[NorthBankDave]

Funnily enough a neighbour said 'You're coping so well' to me yesterday!

For the last couple of days my Mum has constantly asking where my Dad is (he died in 1982). She thinks the car on the drive is his. Yesterday she was asking where he had gone, when will he be back, will he be back tonight, did I know where he had gone & why wouldn't I tell her where he had gone. Today she is worried that my Dad didn't come back last night and is continuing with the same questions. I keep trying to reassure her, trying to distract, trying to help her to feel safe because I know she's anxious & communicating compassionately, but it's draining sometimes isn't it?

I had a text from my friend on Saturday too saying that he is going away for the weekend in a couple of weeks time. It's such a simple thing really but it seems almost magical to have the freedom to do that!

 

[AngelZ]

yep. same. Not just with my mother, but my own worries, thinking about the future, trying to keep calm even though family has treated me like **** and being patient while having to deal with them when they visit.

Denial was serious before the diagnosis but the fact that people are still in denial is scary. People seem to be going between denial and anger and Im the punching bag it seems.You try and stand up for yourself but sometimes its just harder and harder to get through it.

Same here. Family was in denial for a long time. One member is still in denial. Has visited 5 times in 3.5 years and thinks that they have a better understanding of the situation then myself, who has been carrying for that amount of time. I was called a ventriloquist for "manipulating" my relative with dementia to forget them. Yup... because that is how dementia works... *rolls eyes*

In the last 3.5 years I have lost all will and patience with everyone. I have lost friends, my hair, my memory, i suffer from anxiety and depression and I have ended up twice in A&E, first time because my immune system stopped working and the second time for chest pains.