Tired, frustrated and sad

[Julip]

My husband has outlived his prognosis, which is great, but I'm so, so tired I feel like we're not feeling much joy any more. He has bulbar onset and everything is like a mental puzzle because he can no longer support his head at all. Cleaning his teeth is exhausting as I need to brush, suction and push his jaw down at the same time so his breath always smells bad. He refuses mouth wash, breath freshener or moisturising gel/toothpaste. He cannot swallow but insists on trying 4 or 5 times a day leading to lengthy suctioning sessions as his "technique" leads to the water pouring out of his nose. His left arm is very painful but he refuses to sleep in any position other than on his left side. He refuses to sit as the physio has recommended and sits slumped in his recliner with his head flopped down. He repeatedly tries to get out of bed on his own and falls, leading to a disturbed and anxious sleep for me. He can still walk but has very limited use of his right hand only so I need to take him to the toilet, undress, redress,about 15 times a day. He has become very critical of the care I give, so much so that I dread opening emails from him or waiting while he slowly types something on his grid pad. I put his BiPAP mask on and every time he insists on it being adjusted, even though it is in a perfect position. He refuses to accept he is dying, preferring instead to believe his strong faith will save him at the last hour, so I don't know anything about our financial situation, who provides our gas, home insurance etc. I know why he's doing all this, I know why I need to follow him around with his suction, BiPAP, grid pad, water, clothes protector, handkerchiefs, and why we can only sit together for 10 minutes before he needs something, and I don't want him to die but I needed to get this off my chest. I hate this disease.

[Ellie]

I'm so sorry Julia, it's completely understandable why you feel like you do.

I'm not the carer, but if that were my situation, I'd get a firm talking to about the impact my stubborness and pigheadedness were having on my husband. (He works full-time so I've outside carers during the day but he's on duty every evening, night & nearly all the weekend) I've been put in my place once or twice, rightly so too.


Is there any hope of getting some carer hours? Ignore your husband if he objects - your wellbeing is important too and you can't go on like this...

Maybe his local hospice offers Day Hospice too, that'll be another few hours too per week, probably not his cup of tea, but needs must.

If you don't think talking to him directly would help, has he an MND / Community Nurse who'd talk to him and explain how tough it is for you?

Another thing to consider is depression - an antidepressant should help him, if he already takes them, his dose may need adjusting.

A significant percentage of us with ALS/MND develop some degree of FTD-related behavioual and/or cognitive involvement - if his Clinic has a Neuropsychologist, any changes should be picked up on during a routine assessment - so there is a chance this may be responsible for his behaviour.

I'm glad you shared your story Julia, unfortunately there are several other carers in a similar position as yours.

Big hug to you.

Love Ellie.

[Lynne K]

I'm really sorry for your situation Julia. Was your husband a control freak before MND, if so the disease may be making it worse. All of Ellie's suggestions are good ones. It's a worry about you not knowing about any utilities etc. That needs to change but I hear what you are saying about your husbands uncooperativeness. You could do with proffesional advice. A starting place could be a call to MNDA. Good luck with everything. Hugs, Lynne x

[Kayleigh]

Hi Julia,

I'm sorry that you are going through a particularly tough time.

I'm not surprised you feel tired. It must be very draining and exhausting to have to provide such an intense and high level of care for your husband all the time. Hopefully it will be possible for you to get some help from carers and your local hospice.

You obviously love your husband very much and you are doing all you can to make sure that he is comfortable and has everything he needs, all of the time.

As someone who has been diagnosed with MND, I think that your husband is very fortunate to have someome who is as patient, tolerant and caring to look after him, as you are - and I think he should be much more appreciative of your care. Marriage vows go both ways, and so he should be showing you the same high level of love and respect that you show him.

I admit to being fed up and getting frustrated sometimes due to this diagnosis, but taking it out on my family would not be acceptable. If I was rude to them, i'd end up being 'up sh..t creek without a paddle', because I'd soon be left to manage by myself without any help. Your husband is very fortunate that you are so patient and tolerant, but it's unfair that he is not doing his best to support you, in any way he can.

You are a wonderfully kind and caring lady. I really do hope that things change for the better for you, very soon.

Love and hugs
Kayleigh x

[nunhead_man]

Good evening Julia,

You have my sympathy - I am sure I am going to make a terrible person to care for when I get there.

I simply have to say I agree to the other replies to your message.

Do you have any respite at all?

Could you get some as Ellie suggests?

I know this might make your husband resent you even more so perhaps you may think any benefit from this will be outweighed by the losses as it were, but perhaps something to try?

Best

Andy

[Julip]

Thank you all so much; I feel so much more positive just getting this off my chest yesterday. I have resolved to be firmer with him and have contacted Hospice at Home (Sue Ryder) to increase the help I get so now I have help with his shower daily and 2 hours respite once a week. I think that being so close to the situation it's hard to see any solution and your advice has been so, so valuable. He has always been a control freak around money and any major life decisions but we've been together since we were 16 and 17 and he is without a doubt the love of my life. I think that with some clever planning and more help from Sue Ryder we will be able to find some common ground again. I admire you all so much for taking the time to reply, even when you have your own battles. Making the most of the time we have left doesn't seem so daunting now.

[Deb]

Hi Julia,

I am so glad you feel more positive today and that you are able to get some help from outside. It is so important to look after yourself too and keep your strength up. You sound like such a patient and loving wife, even in the most difficult of circumstances.

I have MND and my husband is brilliant but I sometimes get frustrated because I dont like to be so reliant on him. Your post reminded me to thank and appreciate him and insist he had some time to do something he enjoys.

Thank you for sharing and take care,
Love Debbie x

[shrew]

Thats good Julip. Mick doesnt go out often, always been a home bird so unless hes going out he doesnt get dressed. chills in a dressing gown!

[Lynne K]

Kayleigh, I managed the family finances with my ex. We talked about it in the beginning and had a joint bank account that the dds came out of for most of the years. But he preferred me to manage the account. Just as well that I did. That info is not for here. With my second husband (we're still together) we don't have a joint account and we split the responsibilities. I manage all the things that need an eye keeping on like utilities (so I get the best deals) and he pays the more regular bills. It works. The word tradition doesn't mean the same to me as to you. My mum managed the family finances and my nan had done likewise in her house. So our family tradition is for the women to do it (but openly) and I've had a different system each time, sharing responsibility but percentagewise probably more responsibility for me. Male dominance regarding finances if not chosen between the couple is in my opinion old fashioned and sexist. No offence meant. Lynne x

[Lynne K]

Yea Kayleigh. I've been thinking of writing a book for many years to pass on to my kids x