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Caring for a person with dementia and bringing up a child - help!

Angielou

Registered User
Jun 4, 2020
16
I'm really struggling with a husband who has fronto temporal dementia just affecting his communication and sequencing of activities at the moment. Still quite early stages I thi k. Anyway - bringing up our son, who is 10, as well as working part time. I feel like I'm doing a terrible job of these 3 things. Is anybody in a similar situation?
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,816
Kent
How on earth can you think you are doing a terrible job @Angielou It sounds to me as if you are being stretched to the hilt.

It`s devastating for adult children of people with dementia and I imagine your son is filled with anxiety and fear.

I do hope there is help available for you. Even though we are in the midst of a pandemic, please ask for help. You all deserve it.
 

jugglingmum

Registered User
Jan 5, 2014
5,870
Chester
I don't think I would compare my situation to yours but when my mum had a crisis and lived with us for 3 months my kids were 8 and 12. I was also working part time.

Mum has Alz although sequencing was more of an issue than memory in terms of being able to do things.

It was tough looking after/protecting the kids from everything - and whilst I did my best the kids were affected.

As I said I can't compare my situation to yours - after 3 months I moved mum into a sheltered extra care flat, but then set about the task of clearing her house, 6 years later mum is still in her flat and I do her shopping etc on one of my days off.

As it is your husband it is a different scenario, there are a few members on here in the same situation but they don't post that often.
 

Angielou

Registered User
Jun 4, 2020
16
I don't think I would compare my situation to yours but when my mum had a crisis and lived with us for 3 months my kids were 8 and 12. I was also working part time.

Mum has Alz although sequencing was more of an issue than memory in terms of being able to do things.

It was tough looking after/protecting the kids from everything - and whilst I did my best the kids were affected.

As I said I can't compare my situation to yours - after 3 months I moved mum into a sheltered extra care flat, but then set about the task of clearing her house, 6 years later mum is still in her flat and I do her shopping etc on one of my days off.

As it is your husband it is a different scenario, there are a few members on here in the same situation but they don't post that often.
Thanks jugglingmum. I started in this forum a couple of weeks ago and trying to work out how to find what I need to make me feel a little better. I find the sharing of the information with school mums and teachers necessary but really hard. I think it's for the best to share but I don't think anyone really knows what it's like apart from me. Thanks for getting in touch.
 

PalSal

Registered User
Dec 4, 2011
903
Pratteln Switzerland
Angielou-I feel for you. It is a hard row to plough and it can be very lonely and scary.

My husband was 49 years old and I was 48. Our youngest son was 11. (we had three older ones all at uni at the time 18 20, and 22)
My husband had early on set Alzheimer's part of the difficulty was it was all very subtle in the early years. He was extremely forgetful and anxious. Having been a executive in industry, he had a very hard time adjusting to life with no responsibilities and the indignity of not providing for his family. From the beginning he was getting lost, so I hired people to walk with him and it kept him very fit and healthy and provided him kept him in the beauty of nature, and someone to talk to 3 hours most days.
I worked full time as we got no disability payment from my husband's company, as the diagnosis came after he lost his job because of non performance (at that time his delayed diagnosis was unusual and the company got away with it!) I went back to work fulltime.
I have to say that sadly my children struggle to remember their father as a capable business leader and manager, a driven and hard working man. For our youngest son, it was a great struggle-as it was my husband who helped the others with homework and the sciences and maths. I was useless to help the youngest. We gave up a privileged lifestyle and home for a drop in status and financial means.
But we made it. All the children finished their university educations and for that I am grateful. the three eldest are now married and we have seven grandchildren. (unfortunately my husband does not know these children, nor recognize his own)
But my youngest son, is a great help to me now. Thankfully, he does not live with us and has a place of his own. He comes on Sundays and whenever I need him to help me with his father or something around the house.. He has grown into a compassionate young man....a little socialistic for my background, as he saw how his father was treated by the corporate world and capitalistic thinking that only rationality is valued in the western world. He is not the young man he would have been had his father not had his illness, yet he is a wonderful young man.

There were plenty of times when I did not think I would make it , but I did. I just kept going one day at a time. Doing the next right thing, as best I could. Coming here and getting great advice from Granny G and Marionq and others. I am not always perfect as a carer or as a mom doing it alone really. But I must say where the kids are concerned it is all ok. And despite terrible financial worries, today all is well and I have enough. Not extras but enough. I am grateful my husband's siblings and mother have been supportive and understanding from a distance.

Good luck, come here and moan and get it off your chest. I am sure you are doing a "good enough" job on all fronts.
Take care.
 

Angielou

Registered User
Jun 4, 2020
16
Thanks so much palsal. I am a bit worried about the future. It's so good to hear that your youngest in particular has grown in to a wonderful and compassionate young man. I just feel like keeping the show on the road is down to me and sometimes (like now) I really don't want to do it. Still - we have no choice and sharing the burden is a really sensitive issue. I want to protect my husband in the cocoon of home but will need outside help at some point I imagine. Day at a time indeed.
 

PalSal

Registered User
Dec 4, 2011
903
Pratteln Switzerland
Hi again,
Yes, well I have been fortunate that I have had lots of help, in the early days in the form of paid walkers. (as I mentioned in the early years that was 3 to 4 hours a day -I did weekends) Then I added people on contract for the evenings for my choir, attending the Sinfonieorchester and my band and generally enjoying myself. Eventually, I added daycare (3 days per week) --this took a long time to add, as he never wanted to go to daycare because people were so much older than he was in the early years. Eventually, he got past resisting anything and it became easier (but sadder) as he is compliant now in these later stages of the disease. And this week I have added a new service (since corona- care for him all the time again) I have a private care company which comes in for an hour in the evening to bath him and prepare him for bed. As I am spent, by the time we finish dinner.
Bu, this is long journey and I am telling you about the end of the journey and you are in the beginning. It has been the last seven years or so that he does not wish to be in the house alone. He gets afraid., so he is never alone.
But as I said you are at the early stages, it is a long journey, but I am now retired and so things are much easier than when I was working and getting the last of kids through school.
I hope you will get the support you need. I have found over the years that I needed to give myself the pleasures of music and a little travel (real vacations have been difficult to have).
The other thing is trying to be ahead of what we require.....trying to avoid crisis modes whenever possible.
And you must not feel bad about whatever you decide to do......if eventually (and I do expect this for us) he must go into a care home that does not mean you will stop caring or being with him. It is all possible and we must be open to all possibilities. Remember it is one day at a time.......
We are in Switzerland so the services here are different and mostly private. The cost of a care home would have broken me.....so I have done it another way. But I accept that it could be an eventuality.
 

Angielou

Registered User
Jun 4, 2020
16
My heart is just breaking today. I am just terrified of the future changes that will happen. I can't stop crying and it feels like I'm just in survival mode all the time. Carrying out essential things but feeling numb.
 

Izzy

Volunteer Moderator
Aug 31, 2003
62,847
69
Dundee
I’m so sorry to hear that things are so bad for you just now.

Please keep posting here. As you know there will always be someone here to listen and support you.

If you want to talk to someone then perhaps you could think of calling the Dementia Connect Support Line-


Wishing you strength.
 

kindred

Registered User
Apr 8, 2018
2,493
My heart is just breaking today. I am just terrified of the future changes that will happen. I can't stop crying and it feels like I'm just in survival mode all the time. Carrying out essential things but feeling numb.
All sympathy, Angelou. These changes may be very gradual, they will not all happen at once. It sounds as though the shock is overwhelming you at the moment. Of course it’s heartbreaking but it may not be as you fear at the moment. All strength to you. Kindred
 

Angielou

Registered User
Jun 4, 2020
16
All sympathy, Angelou. These changes may be very gradual, they will not all happen at once. It sounds as though the shock is overwhelming you at the moment. Of course it’s heartbreaking but it may not be as you fear at the moment. All strength to you. Kindred
Thank you kindred. I'm not sure why it's so completely overwhelming right now. Blame it on the lockdown?
 

kindred

Registered User
Apr 8, 2018
2,493
Thank you kindred. I'm not sure why it's so completely overwhelming right now. Blame it on the lockdown?
Yes, the lockdown is bound to raise our anxiety levels pretty high. Whole air of uncertainty and desolation around, it’s so so hard to keep positive. Also, I know from experience that the whole dementia future can suddenly frighten us badly and we get overwhelmed. Take it a day at a time, remember how much your welfare matters too.
Warmest, thinking of you, Kindred
 

Laura40

Registered User
Dec 10, 2017
124
England
Hi Angielou,
I can tell you from my experience that everything you are feeling is absolutely normal. One day you realise that and then the next it doesn’t matter that you know, you still can’t deal with it and the crying starts again. This is normal.
my youngest is 16 my husband was diagnosed with Picks 3 years ago and like you I work, try to maintain an ounce of normality and am extremely angry and distraught at the loss of my future with my best friend.
acceptance is really hard, be kind to yourself and make time for yourself And your children now.
 

Karladaisy

Registered User
Apr 16, 2020
25
It must be so hard I hope you see getting help I dont know how your managing . My situation is similar I have my grnadad living with us he has alz and vascular dementia has to be coming onto later stages. I also have a 5 year old who is very resilient and I'm 29 weeks pregnant so I relate to it . I'm coping but have good days and bad days especially with my grandads behaviour and hallucinations
 

Roskill

New member
Jul 8, 2020
4
I'm really struggling with a husband who has fronto temporal dementia just affecting his communication and sequencing of activities at the moment. Still quite early stages I thi k. Anyway - bringing up our son, who is 10, as well as working part time. I feel like I'm doing a terrible job of these 3 things. Is anybody in a similar situation?
hi
My 64 yo husband has fronto temporal dementia affecting his comprehension. fortunately not alot else is affected at present tho he is developing some odd rituals.

Are you plugged in to all the services available? Via carers hubs/carers groups, health service, social services., social workers, OTs, communnity nurses? Befriending organisations.
Admiralty nurses. Crossroads with the 'your health matters' scheme is amazing.
are you getting all your benefits. carers allowance. PIP. etc?
Have you done the power of attorney, will, and legal stuff?
I recently rang the Alzheimers national helpline 03002221122 in a recent desperate state and they were great.
Also a book called
the Selfish Pigs guide to Caring by Hugh Marriott is a life saver. order on line or libraries.
You aren't alone. xx
 

Angielou

Registered User
Jun 4, 2020
16
Thank you for your advice @Roskill. I ordered the Selfish Pigs Guide to Caring and it's great. It's so funny! Odd to think that can be possible. I've got all the benefits and PoA sorted out. I'll ring up the helpline when I have the next crisis. Thank you again