following Scarlett's advice

[PalSal]

Dear TP friends,
I think it is only fair that I share my gloomy and slightly depressed stuff as well as the days I can cope and all my methods of coping over this long goodbye..

I must admit, I have kept myself busy and engaged for so many years and this year 2020 I am a bit worried. I have no great plans for study, or commitment to achieve something (ie obtaining my Swiss passport which took about 3 years to accomplish). I am not doing to well with the thought of not having something to accomplish.

I am feeling very much older and living with the irrationality and the mental obsessions and lack of feeling and empathy, is starting to feel like its wearing me down. I want to maintain a positive outlook on life....but it is not an easy task.

But like Scarlett ....Tomorrow is another day...actually another year.

And right now this very moment.....well give you one guess....yes we are off for a walk! And I will free better afterwards.

 

[jaymor]

@PalSal you are right it is not easy task to maintain a positive outlook, in fact it is ridiculously hard to do and takes a lot of strength and determination. So pat yourself on the back that you chose this difficult but rewarding way to move through dementia. I’m sure you won’t give up, it’s the time of year where we all feel we are no longer part of the celebrations but tomorrow we start a new year and with that same strength and determination you will get through and achieve.

 

[Olliebeak]

PalSal - I so agree! I remember last New Years Eve thinking that surely by this one something would have changed and I would not still be in the slowly tightening trap that is having an OH with dementia. And then feeling guilty at thinking this because of what would have to happen to change my life.

As to setting yourself challenges or goals to try and keep feeling some self worth. I have filled my house and my family’s with crocheted blankets, the walls are covered in cross-stitch pictures. I have done on line courses in art history and researched my family tree as far as it will go but just now I am also stuck for new goals.

As you say - tomorrow is another day / year / decade and as Churchill said - KBO

Happy New Year!

 

[PalSal]

Yes, Jan 2 was a much better day. Got stuck into putting away all the ornaments and getting on with the washing. Humble tasks but got me out of my funk. Nick followed me around all day, but I just managed to be nice and give him a hug. Remembering all the time, that the way I behave and feel is most important. If I am cross and resentful that eats up my life. I wish to live a to live life as full and for the most part happy as I can. So that means from time to time I have an attitude adjustment.. So, I just got on with humble tasks and kindness and it was a better day.
And today the daycare is open again so he will go off for the day, and I will have some alone time.

Survival and some joy in the daily life with this LONG LONG LONGEST goodbye

 

[White Rose]

We had a good day yesterday as we were out with a friend so it's only today that depression has hit as I see another year of deterioration for my partner. I got angry with him this morning because he wakes early and then spends the next couple of hours tossing, turning, scratching, pulling his clothes off the floor but, of course, not getting up and getting dressed, so that means no rest/sleep for me! Last year I was studying and had a job till November, but as he has deteriorated and is unable to occupy himself I'm struggling to have any me time and missing my job. I have booked piano lessons from next week but have no energy or motivation to make any plans or do anything with him - I'm in a 'what's the point' mode. I'm not a natural carer, I'm an independent person used to making decisions for my own life, now my decisions are only related to him and his care, I have no choice of what I do in my own life anymore - you'll all recognise and identify with this of course. But I do feel I'm being selfish as well because I'm not yet 60, will hopefully have more years ahead when I can do my own thing, so why can't I accept this period of my life for what it is and that it won't be forever!!! Just putting into words to people who understand and identifying with @PalSal's post, no response needed!

 

[Dimpsy]

You're not the only one with the New Year blue's.

I usually find that looking ahead to a brand new year is exciting; what will happen, where will life take us, but all I can see so far is another 12 months of living with our hands tied, freedom of choice = none.

As a discussion point, which is the lesser of two evils?
Caring for a husband / wife with dementia
Caring for a parent with dementia

My mum lives with us and is in excellent physical health, dementia is not too bad, although I suppose OH and I are used to her ways so it is hard to assess. She is pleasant to spend time with but I could scream with the feeling of being trapped. My husband and I have lost our freedom, no more spontaneous holiday's booked, in fact no holidays on the horizon at all. Our daughters will grandmas-sit for a couple of nights occasionally, but the retirement OH and I had planned is gone and for how long we don't know.
Our life seems to revolve around mum, any decision is based around mum's needs and OH and I feel as if we are just here to service mum; our persona as husband and wife has changed to nothing more than her carer's.
Yes, we could put mum into a home, but we made a decision to keep her with us for as long as possible, so I should have got used to the idea by now and shouldn't be moaning, sorry. New Year blue's!

Maybe better not to look ahead, just take each day as it comes?

 

[Secondhandrose]

Can so relate to this have husband diagnosed jan 2019 no happy New Years for us just dreading what this year brings and where will we be this time next year my mental health is bad this time of year and I too feel like a prisoner, don’t feel like I have much support from family, there all busy enjoying themselves to care I’m at my wits end already and he’s not even that bad ......YET

 

[Janey B]

Me too only six months since diagnosis feeling so lost. How can we celebrate??? What is there to look forward too. I try in front of friends, family and OH to look like things are ok but my usual New Year routine of booking hols and organising the year ahead seems pointless so left undone. Only recently retired so missing the routine of work as well. Maybe I’ll eventually get use to this half existence. At the moment though everything is just so hard work

 

[Cat27]

Can so relate to this have husband diagnosed jan 2019 no happy New Years for us just dreading what this year brings and where will we be this time next year my mental health is bad this time of year and I too feel like a prisoner, don’t feel like I have much support from family, there all busy enjoying themselves to care I’m at my wits end already and he’s not even that bad ......YET

Welcome to DTP @Secondhandrose
You’ll get lots of support here if you keep posting.

 

[rhubarbtree]

Like most people above the change of year/decade has really highlighted my captivity. I even have to consider when OH will need the toilet and I am usually correct. I am a double person.

My resolution is to try to be selfish. Sounds awful but I have never put myself first, always giving way to parents, children and now OH. I see now that OH was supremely selfish his work, his sport always took precedence and I allowed it to happen.

Now Christmas is over I have to make a decision regarding a care home or longish respite (if I can find some) so I can take a holiday. Have told some family and friends so hopefully they will keep on bringing it up to stop the procrastination.

Now I am living in a University town I have made a start my booking an outreach literature course and asking my son to pick OH up from daycare that day. Bit worried that brain might not cope. Also hope to join at least one U3A group having paid subs for three years.

I too fill my days with craft work (knitting and quilting). Have today chalk painted a mirror frame and planted some (in the sale) lavender plants and tulip bulbs.
But it is getting out and meeting people (hopefully not talking about being a carer) that I miss the most.

Day care back tomorrow so I can get to the supermarket - exciting life.

 

[Olliebeak]

As a discussion point, which is the lesser of two evils?
Caring for a husband / wife with dementia
Caring for a parent with dementia

This is an interesting debate Dimpsy. I was carer for my father who had vascular dementia in his last couple of years. He did not live with us full time but was here a lot and we put a lot of effort in trying to keep him happy, organising him, taking him to medical appointments, shopping for him etc etc. Life had to be planned around him. Soon after he became really frail my husband was diagnosed with Alzheimer’s so for a while it was a double whammy.
I think there are three points here.
1. Seeing your parent deteriorate and become dependant on you is horrible. Role reversal - you have to become the parent. But if they do not live with you, you can walk away and live your own life (as long as you do not have to spend more time caring than being away from them of course)
2. Living with your parent with dementia means you watch them go down hill full time and much as want to care for them you resent the fact your life and if you have a partner your shared life, is put on hold. It takes a strong relationship to deal with it if it’s your partners parent but you do still have each other for support, love and conversation
3. Living with a partner with dementia you lose everything. ( I think if you live with a parent and have no partner, it is probably similar). You watch your life partner, lover, best friend disappear before your eyes and there is nobody else to prop you up - to talk through the problems, share decisions, care about how you feel, give you a hug when you are down.... the list goes on.

Whoever it is affected by the b***** bunch of dementia diagnoses - it’s horrible. But I coped with my father’s illness better than I deal with living with my husband as he is now.

 

[PalSal]

Yes, well I spent the entire day in my pjs yesterday. Nick went to daycare and I pondered for awhile what I should do with the day. It has be extremely cold here....frozen ground.. Did nothing, finished a book, watched some holiday TV and slept on and off on the couch.
I rarely if ever do this. So, it was a real luxury to let go of the "to do" list and do nothing.
Today he will go off to daycare and I will take care of my granddaughters this morning and this afternoon my son is coming over to help me with clearing up the last of the Christmas boxes and put everything away for another year.
Then I face the weekend with Nick. I find that the weekends are hard. Two days of full on NIck is a lot for me now.
But I need to stay in today. Not project to the weekend.

 

[PalSal]

I woke up and decided we would take the train to town today and meet some friends for coffee. Then mill about for something to do . The plan was that we would walk back from the city. But now it is raining and I think it doesn't sound so inviting. But I will force myself to get out of the house otherwise ....Saturdays are just too long.We will just use public transport instead of walking.

 

[Stayingalive]

We had a good day yesterday as we were out with a friend so it's only today that depression has hit as I see another year of deterioration for my partner. I got angry with him this morning because he wakes early and then spends the next couple of hours tossing, turning, scratching, pulling his clothes off the floor but, of course, not getting up and getting dressed, so that means no rest/sleep for me! Last year I was studying and had a job till November, but as he has deteriorated and is unable to occupy himself I'm struggling to have any me time and missing my job. I have booked piano lessons from next week but have no energy or motivation to make any plans or do anything with him - I'm in a 'what's the point' mode. I'm not a natural carer, I'm an independent person used to making decisions for my own life, now my decisions are only related to him and his care, I have no choice of what I do in my own life anymore - you'll all recognise and identify with this of course. But I do feel I'm being selfish as well because I'm not yet 60, will hopefully have more years ahead when I can do my own thing, so why can't I accept this period of my life for what it is and that it won't be forever!!! Just putting into words to people who understand and identifying with @PalSal's post, no response needed!

You are not selfish, you have to retain your own personality, you're not just an extension of your partner and his illness. The challenge is not knowing how long the 'sentence' will be. If I knew that my husband would get worse and have to be put into care and then would last about another 3 years, I could handle that, I could deal with it. But he's only 72 and is otherwise in good health, and his 97-year old mother is in a care home with dementia, a living skeleton with no quality of life, and I dread him living that long and ending up like her. Similarly, I could stand the exhaustion and despair if I knew he'd be going into a care home in a set timescale - say a year from now. What's so hard is watching the daily deterioration but not knowing when the next stage will be with us. I don't mind putting everything on hold for a while, but not knowing how long that is, is driving me round the bend. I want to go and visit my son in Canada for a week in Spring, I can't possibly take my husband with me (did that last year and he was so bad when we came back the Consultant said he needed to go into care immediately), I'm dithering over whether he could manage with carers (private ones) coming in twice a day while I'm away, or if I should more or less force him to go into respite care. He, of course, doesn't think he needs either.

 

[jenniferjean]

I want to go and visit my son in Canada for a week in Spring, I can't possibly take my husband with me (did that last year and he was so bad when we came back the Consultant said he needed to go into care immediately), I'm dithering over whether he could manage with carers (private ones) coming in twice a day while I'm away, or if I should more or less force him to go into respite care. He, of course, doesn't think he needs either.

They never do believe they need care. I don't know your husband so can't say whether carers coming in would be adequate or whether he should go into respite care. But I think you need to arrange for one or the other. You would benefit so much by getting away. My husband doesn't believe he needs a carer but if I had a reason for going away I would go ahead and arrange something. My husband didn't want a carer coming in once a week for me to get out but I arranged it anyway and he had to accept it. Maybe I'm just lucky that my husband accepted it.

 

[White Rose]

You are not selfish, you have to retain your own personality, you're not just an extension of your partner and his illness. The challenge is not knowing how long the 'sentence' will be. If I knew that my husband would get worse and have to be put into care and then would last about another 3 years, I could handle that, I could deal with it. But he's only 72 and is otherwise in good health, and his 97-year old mother is in a care home with dementia, a living skeleton with no quality of life, and I dread him living that long and ending up like her. Similarly, I could stand the exhaustion and despair if I knew he'd be going into a care home in a set timescale - say a year from now. What's so hard is watching the daily deterioration but not knowing when the next stage will be with us. I don't mind putting everything on hold for a while, but not knowing how long that is, is driving me round the bend. I want to go and visit my son in Canada for a week in Spring, I can't possibly take my husband with me (did that last year and he was so bad when we came back the Consultant said he needed to go into care immediately), I'm dithering over whether he could manage with carers (private ones) coming in twice a day while I'm away, or if I should more or less force him to go into respite care. He, of course, doesn't think he needs either.

Agree, not knowing the timescale is so difficult, my partner is in excellent health too, but if he lives to be in his 90s I'll be a basket case (think I almost am now!). Don't know what stage your husband is at but my partner could have managed with carers twice a day a couple of years ago if I went away, now he couldn't manage an hour on his own, would be impossible to leave him overnight and if I was going away he would have to go into respite. We went to see a nice place and I explained it would be a week's holiday and he seemed to accept it - we are just waiting for a vacancy now, I'm desperate for a break. Go to Canada and enjoy it.

 

[Vitesse]

Can so relate to this have husband diagnosed jan 2019 no happy New Years for us just dreading what this year brings and where will we be this time next year my mental health is bad this time of year and I too feel like a prisoner, don’t feel like I have much support from family, there all busy enjoying themselves to care I’m at my wits end already and he’s not even that bad ......YET

Sorry, have only just read your post. Don’t dread the year, if your husband isn't too bad, make the most of it. Don’t tie yourself to him and the house. In the first year after my husbands diagnosis, we travelled a lot and got out and about a lot, which was great. It came as a bit of a shock the following year when he was starting to have hallucinations and delusions, and our travelling came to an abrupt end. The other mistake i think I made was not to get a carer in earlier or get him to go to the Day Centre earlier, while he could socialise and communicate. Now, he is tied to my apron strings constantly, and that is difficult. He refuses to have anyone else to look after him.

 

[White Rose]

Me too only six months since diagnosis feeling so lost. How can we celebrate??? What is there to look forward too. I try in front of friends, family and OH to look like things are ok but my usual New Year routine of booking hols and organising the year ahead seems pointless so left undone. Only recently retired so missing the routine of work as well. Maybe I’ll eventually get use to this half existence. At the moment though everything is just so hard work

To you @Janey B and @Secondhandrose I'd say, looking back to early diagnosis travelling was the best thing we did, we did a few cruises and my partner does remember something of it because he's always asking to go on the boats again. Travelling days are over for now, too stressful for me and confusing for him, so I'm glad we did it while we could. I'm hoping I'll get my chance to travel again in the future. Try to enjoy your time together while you can still have conversations and get all the legal stuff in place and discuss carers and such things, make sure you're living where you want to be or move while your husbands are still able to understand and adapt. Wish I'd known more of what to expect in the early days, my decisions would have been very different.

 

[White Rose]

Dear TP friends,
I think it is only fair that I share my gloomy and slightly depressed stuff as well as the days I can cope and all my methods of coping over this long goodbye..

I must admit, I have kept myself busy and engaged for so many years and this year 2020 I am a bit worried. I have no great plans for study, or commitment to achieve something (ie obtaining my Swiss passport which took about 3 years to accomplish). I am not doing to well with the thought of not having something to accomplish.

I am feeling very much older and living with the irrationality and the mental obsessions and lack of feeling and empathy, is starting to feel like its wearing me down. I want to maintain a positive outlook on life....but it is not an easy task.

But like Scarlett ....Tomorrow is another day...actually another year.

And right now this very moment.....well give you one guess....yes we are off for a walk! And I will free better afterwards.

@PalSal I just wanted to say I'm in awe of you for all the years you've been dealing with your husband's dementia and how you keep going. Wishing you a happy 2020.

 

[PalSal]

@PalSal I just wanted to say I'm in awe of you for all the years you've been dealing with your husband's dementia and how you keep going. Wishing you a happy 2020.

@White Rose
Yes, but I often wonder how much longer I can keep it up. But I come here and read where others are and I am grateful that we have been able to do this for so long.
Last evening I went and sang with my classical ensemble and today I will be singing again with my rock band. The guys have managed to find a new bass player. I agreed I would come back it they auditioned and formed a new group. So I guess its forward again.
One of Nicks carers will come and give him a walk and I will go off to this band practice. Keeping us both happy.
Happy New Year to you too White Rose.