Are there any care givers out there like Me?????????

[oesdog]

Should I post this – or not

Ok I will ?

Thing is I guess it would be nice to find out if anyone out there is feeling the same as I do,
Or doing the things I am doing each day?
I am always tired. I go from day to day exhausted and nothing changes. I guess now nothing will.
I look at my family and I wonder how it got to this stage? But it has and we just keep going. Sometimes I don’t want to keep going because I am so tired I just want to fall over. But I know I can’t.

This last 2 yrs has been really hard work so I guess I will start with that and go from there.

I was diagnosed as having Fibromyalgia a kind of Arthritis, which meant I couldn’t walk the length of a room without excruciating pain. So sometimes I literally had to crawl on my hands and knees to get the things done that I had to do. ( Like washing my son and changing him!) Things started to improve for me and then last year I got a lump on my neck and I had to go for tests. They thought I might have Cancer (How could God do that to me I screamed as I washed my lovely long waist length hair in the shower?) How when I needed to be able to get around and do things and sort things for everyone else? I wouldn’t be able to do anything. I would be really ill and I would want to hide away. I certainly wouldn’t look like me for a very long time I thought as I looked in the mirror. The tears rained down uncontrollably, and I screamed a big long scream – I am sure the neighbours thought I was being murdered! I rang the cancer care line and sobbed to a stranger for an hour. 8 long weeks later and post surgery I got the all clear – Thank God it was not Cancer – I pulled my long plait through my fingers and kissed it. I haven’t cut it since my daughter was born and she is 21yrs old! My DH was totally beside himself and didn’t know what to do with me for those 8 weeks. – So he took me out one day and he bought me 6 chickens! He knows I love birds and it was his gift for me to take my mind of everything – and so here I am on BYC a Mad woman who screams at mirrors in her bathroom telling you all of this.

Well that was a long old 8 weeks but things gradually got back to some form of normality. The Fibromyalgia didn’t even bother me for a long time after surgery so I felt great. DH and I struggled on with our care duties - we have twin boys 23yrs old both with disabilities. One functions as a baby and needs constant care 24/7 and the other needs help to be able to live independently. Which means he needs help to do his finances, washing, shopping and reminders to do things like shower or feed his pets!

Then DH began to feel ill and grew very tired and grey over the months. Something was very wrong. Then one day he got real bad chest pains in work and had to be rushed to Hospital by Ambulance. DH had had a mild heart attack. He was sent home and put under the care of a cardiologist. We had tests done and all the time DH got weaker. The man who helped me to do all the care duties and wouldn’t think twice of working 18 hrs work straight couldn’t even get out of bed some days. When we went shopping he would always be – the man and push the trolley – but now he couldn’t even walk the length of the store. He would sit outside and wait. We finally got to see the cardiology team and he was sent for surgery. The major artery in his heart is damaged. So he had to have three coronary angioplasties and a stent put into his heart. By this stage I was beside myself with worry… So now I added DH to my list of folk to care for. - He is still at high risk of heart failure.

At the start of this year my lovely brave little daughter told us she was expecting her first baby. It was not planned and she is not married. There was a great deal of soul searching. She decided that she wanted to go ahead with baby even though she doesn’t want it! So this year DH and I have been doing our best to get her sorted out. We have got her a lovely house in the next village and her partner has stayed – even though he is only 19 and terrified! We discovered to our alarm that our daughter also has a coronary condition and guess what we ended up with the very same cardiologist her daddy is seeing! The Hospital is getting to be a bit of a home from home!!!!!!! We are now thankfully all sorted for the baby coming and are hoping that with our love and support our daughter and her partner will be able to see themselves as young parents and start to be a family. My daughter is hoping to go back to teacher training in the fall so guess what? - Baby is yet another to add to my, to care for list! I have to teach my daughters partner to be a daddy – that sure is going to be hard work!!!!!!!!! But he is here and didn’t run away and is willing to try so, Well so am I. Both of them still say "we don’t want to have a baby". – but bump is due well anytime now really so hay its coming ready or not guys!!!!!!!!!

So in short I have a boy of 23yrs in nappies who plays with baby bricks on his bedroom floor and loves music and dancing, and can go for up to 36hrs without sleep. I have another boy the same age who constantly needs care and attention and more than anything supervision!! DH is slowly recovering but is often ill and tired and still spends a good deal of his day in bed. My daughter has been given the all clear for the birth by the cardiologist which means despite her heart missing beats he thinks it will stand up to the birth - ( Hope he is right?) Then I have a terrified – sort of son in law – who cries every 5 mins because he is frightened! But he will get there in the end. – and baby on the way! and to top it all I will be a granny as well -

My days are spent in exhaustion at the moment as I try to keep my head above water and keep everyone going. – I wish I could go on a long break but I know I can’t. So instead I go hide in the chicken coop and talk to my girls! They are wonderful and have been such a help these last two years. They keep me going !
Now I also have BYC - ! and all the folk I have made contact with through my chickens I am so glad I got chickens!!!!!!!!!!

Oesdog – if you think I am insane your probably right!!!!!!!!!!!!

Is there anyone else out there like me???????????

 

[Tigerjane]

Wow, I really admire you for the inner strength it takes to be so giving of yourself on such an extreme level. I'm sure your family knows you're their rock, and they're so lucky to have you.

On a different note, are you getting any help with your sons? There are some state programs where a nurse will come out and help with basic care for disabled. It'd give you some respite.

 

[oesdog]

Sorry - don;t live in the US and here there are no options. We haven;t had rest - bite here not for 13 yrs! You kind of have to organise your own and some help is offered financially but if you can;t find anyone to help you just don;t get! We just muddle through! I think they call it care in the comunity here! -

Thanks for asking. my little helper is just about to have a baby!

 

[Tigerjane]

I'm sorry, I didn't look at your location. That's too bad about not getting any help. There's growing awareness here about doctor's looking out for the caregiver (because of all the baby boomers taking care of two generations - their elderly parents AND their own children). Suffering burnout is a very real possibility, and it can lead to increased health problems for the caregiver. I hope your "son-on-law" is able to get things together and help care for his little family, so their increased independence helps lessen your load. Keep up the good work!

 

[Lifetime chicken lover]

Do you have any friends or family members to help out sometimes? I know its hard to accept help sometimes(or ask for help), but it sounds like you could REALLY use a break. Even just a day without the twins- there must be someone who can take them for just a day- or even a few hours. Perhaps then, you and your husband could have a date, and just talk. Or go out with a girlfriend and just vent your frustrations. A good friend will definitely understand.
I care for disabled adults and children by profession, I know it can be very trying, and there are certainly good days and bad days...but just remember, that if you have to be everyone's rock to lean on, you need to have a strong base of support for yourself. Please take good care of yourself- including mental health. Always being tired is often a first warning sign for both mental and physical health problems.

 

[oesdog]

Thanks - but we are in a situation where there isn;t anyone here - rest of family live very far away so that isn;t an option.

We do get a few hours when one of the twins goes to adult care. - but most of that time is used up these days trying to do things like shopping and endless washing or just grabbing a nap. Our friends are all over 50 and it is hard for them to take on the care of a young man who bites and kicks and has fits. So that isn;t really fare on them. I understand why they don;t offer and we lost a few friends who - well did??

Oesdog - I am insane - I have no mental health issues my mental health went away long ago! -

 

[jbowyer01]

I'm a caregiver but it seems like mines a breeze compared to all you have. My DH has parkinsons and a few other health issues that limits him on things. I work a full time job that is an hour away from our home on top of that. I recently had to give up my very loved chickens because I was just to exhausted to really take care of them (they did get a lovely home from a fellow BYCer). Its hard and I am always exhausted. But I take it one day at a time (sometimes one hour at a time lol) and I keep going. I am thankful for my DH and when he has a good day its wonderful and when he has a bad day, well I tell myself its still wonderful becasue I still have him with me. Sooooo to make a long story short yes I totally understand!

 

[oesdog]

Nice to hear from you and I do hope that you are not too tired today and have many GOOD days to come.

I can empathise with the total exhaustion. - My son sometimes goes for up to 36 hrs without stopping. It is really hard work. If he wakes in the night I can;t leave him because he may have a fit or hurt himself. We have to keep a strap on his door to stop him wandering! But to keep it easy for us to get to him in a hurry like if God forbid we had a fire or something? We usually take turns If my DH is up to it. Usually we have to strip the bedding and totally change our son etc. Then he simply wont go back to sleep so that means often he is up from about 2.30 am. It was easy to get folk to help when he was tiny and cute but not so when you have a grown adult.

We actually stopped going to church as he grew because there were no facilities for him. I mean we couldn;t put him in the crache because he was not a baby and they wouldn;t have him in Sunday school - he didn;t understand anyhow. We couldn;t keep him in the church service as folk complained when he screamed and stuff so we just ended up pacing the hall. Got fed up with that so once the other kids got past the Sunday school stage we didn;t go anymore. No one ever offered to take our son not even once so we could sit and enjoy a sevice. We are going out with friends for lunch this week, they are lovely folk and we meet up a lot when we get the chance - but although they no how tired we are they have never ever offered to help care for our son. - It is simply something folk are I believe afraid of. I stopped expecting offers! When our son bit a friend of ours and I never saw her again I kind of realised I was not going to win this game.

At least with my own kids I kind of know what I have and do not have. - you do get tired of fighting, then one day you just realise your energy is better used just to survive day to day and you just stop fighting anymore and you just tread water and keep your head up. - Our son has just decided to scream at the top of his voice that he is - stinking the house!!!!!!!!! - anyone wanna help with nappy time????????? Hands -???????? yeah thought so - just me again then! -

Oesdog. -

 

[sunflowerenvy]

yes oesdog they are a lot of people out there like us caregivers. but i don't really like talk about my self [personally]
i will tell you a little about my situation. i been married for 28 yrs to a wonder patient hubby and have a 19 yr old daughter . We have 3 dogs, 6 cats n 10 chickens.
I am take care of 92 yrs old mom who has Alzheimer in the middle stages, COPD, osteoporosis, colostomy bag in our home for the last 6yr[right now we r renting until we find a home] she is bed ribbed n wheelchair bound. she get sick a lot of time so i feed her at least 3 to 4 days a week.i received help with her for at least 2day to give her a bath n one day they wash her hair, and pt comes 2 x week to get her to walk about 30 ft .i only have time have to get out of house to go to town is once a week for food and town is 45 minutes drive or look for homes for sale. and my escape is to go see my chickens 4 times a day.
my hubby 65 yr old had 3 heart attacks and they put in5 stients in his heart, he is slowing down here cannot take the heat any more. so he lay around and want me to sit with him and do all the housework and handing up 3 loads of laundry a day outside from mom n meals , when we go out together i drive now.
i am a 51 yr old woman who was born with cerebral palsy involving my right side have a speech impediment also have dyslexia going thur menopause what fun. walking with a cane. and sleeping about 4 hour a night/ wishing at 5pm it was time to sleep but have 7 more hours to go. life is bit ch but i glad that i am still walking.
have a great wonderful day

 

[sunflowerenvy]

stinking the house!!!!!!!!! - anyone wanna help with nappy time????????? Hands -???????? yeah thought so - just me again then! - laugig barnie
can you tell them that u want to take a nap and play so soft music tunes for them.

i learn from taking care of mom . i tell her it time to get her ready for bed at night she put a big fight. now go into her room and say i want to go to bed and let me clean u up for the night and she let me do it. i put her sleep timer on her tv so it go off