Lost it!

[Danijela]

We have had a hard month. Breakdown in care arrangements, having to use an agency (different people turning up without much clue about our routine and lot of paperwork!), colds, chest infections, weakening legs and now finally inability to stand up for transfers.

Throw in a referral to hospice (our idea, still quite emotional), a small boy who requires a lot of attention, my full time work...it has been really tough.

During all this time I tried to put my head down, manage all the task to the best of my ability, try to grab a few hours a sleep a night so that I can function and do it all over again. During all this time L just pushed and pushed. His demands are exceeding my ability to meet them. It is not the big stuff, he is not asking me to dig the garden or anytihng like that, it is just the CONSTANT low level pestering (for the lack of a better word). I am very precise and organised and work hard so that I can have half an hour in the evening of 'me' time. I settle the child in bed and I deal with all L's needs. As soon as I finally sit down to relax he starts looking 'sad', deep sighs, caughing, shifting, shuffling, asking for a pillow, asking to remove a pillow, asking for certain foods, refusing those same foods...it is just constant. I understand that he may be uncofortable and that things need adjusting, but it is the attitude that stinks at the moment! He always looks so pained! But...that is just with me. As soon as he is around other people he cheers up and tries to put a brave face on. This is misleading. To other people. They think he is doing fine, while I am drowning in endless task and chaos of emotions. I believe he CHOOSES to be this way with me, as if I deserve it in some may, while others are spared.

So how I lost it? Well, he was asking me for the 10th time in 5 minutes to adjust the straps of his bipap (it was fine, he was panicking for no reason) then he said he was 'struggling to breathe' (bipap was on, he had an oxymetry recently - result = adequate ventilation). I lost it and just took the bipap mask off to show him that he is not struggling to breathe (he was proped up on pillows) at which point he started to argue with me - which kind of confirmed that he was not really struggling, just panicking. Sorry L, I tried the patience and it did not work, I had to resort to bipap removal. I am not suggesting you try this at home! The bipap went on once he calmed down... Dani

 

[joni51]

Bless your heart, I don't know how you do it all with a little baby.. Hugs to you!

 

[brooksea]

Wow, Dani! I don't know how you have been juggling all of that responsibility AND working!

As soon as he is around other people he cheers up and tries to put a brave face on. This is misleading. To other people. They think he is doing fine, while I am drowning in endless task and chaos of emotions. I believe he CHOOSES to be this way with me, as if I deserve it in some may, while others are spared.

Please know that what you have stated above seems to happen to a lot of cALS, myself included! My husband once told me that I hated him, just because I became irritated during a really trying day of constant demands.

None of us are saints, so don't be too hard on yourself. Even without children and a job, caring for a pALS is not for the faint of heart. Hang in there...

 

[momap53]

Hang in there Dani! You're doing an amazing job

 

[ReneeM]

Dani.... WOW! I hadn't thought of the Bipap trick! Yes my husband sometimes asks a million little things of me too! And I work full time.

The time I almost lost it is the night and early morning he woke me ( we have a remote door bell ringer) at least 5 or 6 times. I had only 1 hour left untill I had to get up to work. Luckily my daughter was home that night and she came running when she heard me ask LOUDLY - NOW WHAT?!

Anyway... yes it does get frustrating. But in the end you are a very strong and capable caregiver and loving wife and mother. What would the world be like if we weren't?

 

[susanf]

Dani, you are amazing, I would have lost it on him. Maybe you should have a heart to heart with him. Tell him what you told us.

 

[Mick n Ang]

Oh Dani,
I have just read your topic to Mick and boy did it ring so many truths we are all facing at the moment, only yesterday we were talking to the Hospice OT, saying how much we tend to be bickering at one another and that although Mick doesn't mean to he does some panicking when I don't really appreciate it. He still will not have carers of any kind so it is just him and me 24/7 at the moment, and like you I am also trying to hold down a full time job, (from home) although you have Stanley to consider also. I don't have answers to helpyou but just wanted you to know that I completely relate to where you are at. We have gotten around the transfers for the last 12 months with banana boards and hoists now , but trying to dress him from below the waist is a big bug bear of mine at the moment. Maybe its a man thing as I am sure us women wouldn't be as demanding. Hope you sort the care out soon and get back on some level pegging, constantly think of you all xxx Ang

 

[Katie C]

Dani... I once got so aggravated at the nit-picking that I chucked a large drinking glass against the wall. It was made of heavy acrylic so it didn't break.. but it left a nice dent in the wall (that's still there by the way!) You might want to take a look at the ALS/FTD forum... there are links to a couple of recent articles concerning cognitive and personality changes. Once my son and I realized that Glen really couldn't help the nastiness, it helped us be more compassionate. Still wanted to smack him,, but understood it wasn't really "him".

 

[notgivnup]

Dani, I am so sorry you have so much to deal with, it is heartbreaking. You are doing the best you can, find comfort in that. You are only human and can do only so much, go easy on yourself. My Prayers are with you both. Big Hugs

 

[Barbie]

Dani--did you ghost write a post for me?! LOLOL
You are doing an amazing job in terrible circumstances. Honestly--what more can you do then the best you can everyday--and I know you are doing your best.

And Katie--I once threw a hair brush across the bedroom and shattered it. And dang it --it was an expensive one! It felt soooooo good though!

 

[heymom05]

Are you kidding? Sunday night Kevin woke me up for at 1:30am and3:30am to pee then at 4am to tell me he was sitting on the face of the sun (he was hot). I told him to catch a suntan and went back to sleep....i didnt even remember that until later Monday afternoon and cracked myself up laughing! When I called Kev, we laughed about it together!

 

[Danijela]

Thanks everyone. I am glad some of you can relate. I have been sooo tired in the past few weeks that it feels like I am living in some kind of dream/nightmare. We have had another 'chat'. Usually, following my outbursts and our subsequent chats things settle a bit and L starts showing more kindness and empathy. But this does not last all that long...from few hours to a day or so, and we are back to the threadmill. I transfered him from bed to shower chair this morning, to speed things up (takes me 3 minutes, takes carer 15 or more), and then proceeded to get ready for work. In the middle of me trying to gather some important paperwork he calls me to help transfer him from shower chair to wheelchair - it is his carer's job! If she can not do it then he needs to sort out tranfer boards, hoists etc....but he is unwilling to do so and expects me to get the ball rolling and sort things out (he can speak and email, so he CAN contact relevant professionals). He ruined what was looking like a good morning.

Good morning all! XD

 

[Georgia Peach]

Boy, you could have been me cloned. Some nights when he wakes me up to use the bed pan and then complains that I don't care for him as well as his CNA I want to clobber him. I told him if I knew I was going to be a nurse., I would have gone to school for that instead of being an educator. All in all, we are muddling through.

My husband can't stand either and we are still using the transfer board. Do you generally use the Hoyer lift? I'm still not comfortable using it by myself and we didn't pull up the carpeting in his room so it's hard to use.

 

[Danijela]

I hate wasting time. OK, I want him to be safe, but when I see endless fussing over a simple transfer by a carer it simply drives me crazy. I use my arms:shock:and my body to transfer. I lift and place on chair. He can bear weight and walk a few steps (each day less and less).


We are just entering the world of transfer boards. I have been looking into Beazy (hard to get in the UK and expensive). It seems to me a person needs some upper body strength for board transfers - how much/anyone? Beazy allowes sliding, or at least it looks that way.

Hoyer lifts? I know they will come but feel these things take a lot of space. I watched a YouTube video on using one of those - what a faff! I mean you may well dedicate your entire day to transfers! (at least a number of transfers my partner requires in one day).

I know it is a tough illness, taking my lover piece by piece, and that is why I wish to minimize all the stuff that is just illness (body fluids, transfers, feeds) and avoid us both BECOMING the disaese. Yes, this stuff needs to be done, but I want time off, away from MND, where we are not constantly thinking and talking body fluids and transfers and dreading the next time he may need a loo. I want to salvage some normality...

D

 

[brooksea]

Dani, it sounds like you need a break! Are there any respite programs in the UK for caregivers? Just a few days can do wonders to help you recharge. Maybe you could have someone take care of your son while you take care of yourself!

As for salvaging normality...good luck with that! I have just about given up on that aspect.

Oh...and do look at the FTD forum for those articles Katie mentioned.