Stuck in a rut

[sallyb]

Hi folks, long time no posting.. My mom continues to steadily decline with my dad as her full time carer. She does not want to meet anyone, leave the house & essentially is now only allowing my dad to do certain tasks with her (eg shower/walk to bathroom) because she is "so bad" none of us could do it safely or properly or whatever. He seems to be doing ok (though I wonder would he tell me if he wasnt), & gets out for maybe an hour at a time here & there, keeps telling me that he will tell me when it is too much for him & that I can't do anything more. I just find the whole situation incredibly depressing and stressful. I worry about my dad & I feel sad that his life has been put on pause. I am so angry at this crappy disease, the fact that there is nothing that can be done, the fact that both my parents lives are ruined. She seems like she has just given up. I often wish it was over which I know is a horrible thing to say. I know I will look back in six months time & think "wow wasn't it great then when she could swallow some food or transfer with help etc etc" but I don't feel at all grateful. It's her birthday this week & I am dreading it. Last year lots of tears (her though the rest of us felt equally rubbish) this year I am like what the hell are we celebrating exactly? Another year of this ****?
Don't feel like my ability to deal with this is improving at all. Do you ever get any closer to acceptance? Any words of wisdom appreciated, even the pull yourself together type.

 

[Snowman78]

I truely understand your feelings. My dad got where he didn't want to do anything or go anywhere or be around people because of this disease. I do understand her only wanting him to do certain tasks also. Dad wasn't always that way but as he progressed he wanted me to do certain tasks such as moving him bathing him dressing him etc., but that was mainly because he felt more safe with me doing it because I am bigger and stronger and can support his weight. This also came about after several falls and mom couldn't stop him or get him up. I have learned to just understand/do certain things just because that is way he wants it. There are definitely emotional days but when you are facing a terminal illness as ugly as this one there will be. I have days I just want it all to be over, days I am angered because at 36 I have put the bulk of my life on hold, upset to see dad go through this and see what it is doing to mom. I have come to learn these are all perfectly normal feelings. They aren't necessarily directed towards dad but rather the disease. I don't want dad to go, but I don't want to watch him suffer any longer. I pray that you will find piece and find your way to help your dad and mom. It is a hard road. I am an emotinal wreck at times but when it happens I seperate myself get it out and get back to it. I have even lost a relationship because she felt she was taking time away from me being there for dad or atleast that was the excuse. I don't know if this will help you any but know what you are going through and thinking is normal. This is a great place for you to turn, there are many awesome folks on here that are very supportive. Prayers to you and your family!

 

[lgelb]

Sally, I'll go you one better -- I think my ability to deal is declining, along w/ my husband. Acceptance may be in the cards for some but not me (or you?)
Snowman, our son will be 32 in a couple of months and I imagine he feels as you do. He moved, quit his job and gave up most of his personal/social life to be with us. Your parents may not always be able to talk about how much they appreciate what you are doing for them, because sometimes what our children do for us and shouldn't have to is even harder to face than illness and death. But they know, and love you for it.

 

[Snowman78]

Thanks for your kind words. I have never hesitated to do whatever needed to be done, but sometimes you can't help but look back and see what all you have given up or passed up. I would do it all again and hopefully better if I had to do it again. They took care of me and raised me the right way and it is my responsibility to be there and care for them now. When things run there course I can move back on my own and resume life as it was and hopefully even better and with a new outlook on life, but as of now I am needed at home.

 

[affected]

Sally, I'm so sorry every single time I read what is happening to yet another family.

This is as big as it gets you know - every single one of your feelings are totally valid.

Acceptance is so difficult - I did find acceptance, but I don't know to be brutally honest how much of my acceptance was linked to the rapid progression my husband had. It's hard to explain, but I feel that if he had progressed say at half the rate, and therefore was alive this winter and I was watching him decline and struggle with the cold ... well I just wonder how well I would be doing, as I can easily imagine how it would be for him.

I think that we find much comfort when we can do things that help, but your post sounds like they also resist your help in many ways. I know for me, the hopelessness of a disease with no cure or effective treatment, was the hardest as I'm a solutions person.

Can you put your thinking cap on real hard and think of any little thing you could start doing that might bring some quality back into your parents lives? I can't tell you what, as you know your parents. But something like: create a little garden on a verandah, outside a window, somewhere it can be seen easily. or start reading a book to your mum for an hour each week and have dad go out for his own respite or watch a favourite tv show or sport with her each week ...

The trick is to find something that she had particular enjoyment from before ALS, and find some way to involve yourself with her and whatever that is. Don't attempt to be doing personal care, she has drawn a line there. This could also just help build a bit of a situation where your dad can start to relax and have a little time out, and you and your mum find a way to have some quality.

This disease sucks, it's the pits, I hate it with a vengeance. I wanted my husbands suffering to end even though it meant he would die. Don't hold back from venting how you feel, we all feel it and somehow we carry on each day anyway.

Read that quality of life thread that is happening. If you can find some way, even if very small, to increase the quality of your mums life, it will increase the quality of your and your dad's experience in all this too.

Tillie xxx

 

[sallyb]

Thanks for all your kindness (and good logical advice Tillie!). I suppose I even have to just ride out the feelings, with my logical hat on I can say well at least I am able to function in work even though I am prone to snap at people. Is that progress?! Then back to weeping for an hour. Sigh. Anyway it is what it is I guess & just have to deal with it. I wish I knew what to do on a practical level - the stuff she loved was talking (now un - intelligible most of the time with no interest in apps for speech etc), travel, sitting out in the sun (now too weak to do this). Still tries to get her oar into every conversation just takes about 5 repetitions of the sentence & 100% concentration from the listener. It's cruel all right.
Snowman it's funny I had read a few of your posts & thought of the similarities too. Whatever your inner turmoil you sound like you are doing a great job. I hope ye have a great time at the party, I can imagine it will be emotional for everyone but it's such a lovely thing to do for your folks.
thanks y'all. Will have a gander at that QOL thread.

 

[affected]

oh Sally I hear you!

My husband ran cafes for many years - his life revolved around talking to people. He could be cooking 10 different meals at once and holding 3 separate conversations.

He talked non stop - he used his hands and facial expressions constantly. I would hardly get a word in edgewise most of the time and would just be rolling about laughing.

People didn't believe me completely but it's true that in the first couple of months of our relationship we were both so exhausted from lack of sleep - honest truth is because he would lay in bed beside me and talk non stop until 3 or 4 in the morning and I would laugh and feel like I was having a sleepover with a school girlfriend. Actually with a bunch of them because no one else would talk that much!

Then, the other side was food. He was known far and wide for so many dishes he made. He made everything in the cafe from scratch, even cooked the chicken for the sandwiches himself. So food, coffee and talking long was a huge part of his being.

So losing his speech and swallow first was the cruelest hell imaginable.

It was very difficult for me to find things to try and make his quality of life better.

With your mum, what about something simple like a fish tank for her? You could plan it out together by you researching and showing her things to accept or reject. Then she has something to look at, and something for you to enjoy with her. Doesn't have to be a huge expensive one, probably best to start with a modest one anyway in case it doesn't work for her. You can always expand if it works. Many people find watching fish therapeutic.

I don't know, it's all so personal, but I'm sure if you think about it you can find something. Really anything that lifts her day a little has to help.

Yeah you got me too - I'm a logical person, I love logic. Sometimes I find it easy to use logic to help cope with deep distress, OK most of the time I do...

We planned to set up a fish tank for Chris, but I never got around to it, it was the next project we were going to do together (well I was going to do with him directing me lol). We had just nearly finished a project of some lovely displays of plants on the back verandah where he spent so much time. With winter coming, I knew he would be too cold out there, so the fish tank was going to be an indoor winter project.

 

[Santa joe]

Sally, I hear you honey. My pals is miserable in his life. This man once so full of life - it's the saddest most heartbreaking experience. He pretty much lays in bed (bedridden and unable to speak) and watches TV all day. He has gotten to where he doesn't like company any longer. Everything aggravates him. So that's his life. I hope,like Tillie said, that you can find something she likes. It's ok to feel the emotions you're experiencing. Most of us have the same ones. It's hard to stay positive and motivated in such a bad situation. I wish I had some words of wisdom, but I don't. Just know that you are not alone and please don't hesitant to reach out to us CALS and PALS.

Debbie

 

[SMP51]

..... I wish I had some words of wisdom, but I don't. Just know that you are not alone and please don't hesitant to reach out to us CALS and PALS.

Debbie

keep looking at this thread and have nothing to add, 'cept I drag myself outta my rut every morning and start fresh.


Tillie, we did fish tanks, one planted, one kinda planted. 40gal and 65gal. tending them twice a week gives me something to do "with" him beside the TV.
one of the bee hives is in front of his window so he gets to watch me tend thatas well, sometimes very entertaining I am sure! lol
our little dog spend the day up and down off his lap.
and I sit on the floor and sculpt little figures in clay so that can distract for a while, though I have not done this in a while, running out of steam I guess.

activity in the house is what I strive for

 

[weavie]

Hi Sally, I've just read your original post in this thread and my situation sounds very similar to yours and I guess I am replying to tell you I know exactly how you feel.
My mum has bulbar onset and is now very weak in the advanced stages. My dad is her main carer, but I visit nearly every day and help out where I can. My dad started off being very much 'in control' of everything and didn't want my help. He said to me once 'this is my house and I will do it'. It broke my heart. I had to put myself back together, put aside the hurt and front up again the next day and the next. Slowly over the past few months, he has slowly accepted more help, in his own time.
During that time I would do little things in the background, without making a big deal of it-like the ironing, hanging out the washing, washing the dishes, changing bed sheets, taking over some meals.
The fact your mum won't let anyone help in the bathroom other than your dad, could be that she feels safe with him because he is always there and/or she may be feeling embarrassed to be in this state of increasing dependence. I am not sure what assistance is available to you, but my mum started with having Personal Carers come and shower her 3 days a week. This had now been increased to 5 days a week so it gives my dad some respite as his back was getting sore and has actually just been diagnosed with sciatica from a bulging disc. Today my dad asked if I would go over tomorrow afternoon so he could go and watch my nephew play football. To my biggest surprise, he has even arranged for mum to have overnight respite next Tuesday night!. I was so shocked, it was actually me who is the apprehensive one about this!
The whole situation is definitely depressing and stressful and I hate having to see my once lively mother sitting in a chair unable to talk, eat or walk. I hate motor neurone disease and I will never accept that she ,or anyone else, deserves this horrible, inhumane disease.
But it is what it is.
Today my mum opened her eyes and smiled when my daughter asked for a pet camel, yesterday she opened her eyes and smiled when my other daughter told her she got straight A's on her Year 9 exams. I know she is still in there, the same person inside a body that is falling apart. The hard part is trying to find something that will let it shine through. When I 'see' my mum, I am happy, even though I know each time it may be the last time.
I have said the same thing to my husband - she looks like she has given up - he reminded me that she is using all her energy to just keep breathing. Don't expect too much from her, she is doing the best she can to cope with getting through each day.
Our mothers have loved us unconditionally since the day we were born, supported us and cared about us our whole lives. Now it's our turn to do the same in return, they deserve it.
I feel your pain and sadness, you are not alone

 

[MaxEidswick]

>I feel your pain and sadness, you are not alone

So say we all!

 

[affected]

Weavie said something there that jumped out at me like a spark from a fire!

"I have said the same thing to my husband - she looks like she has given up - he reminded me that she is using all her energy to just keep breathing. "

This is a lightbulb moment for me, I already knew it, but still it's so important for CALS and family to understand this.

The amount of energy it takes for every single little thing with this disease must never be underestimated. Doing a standing transfer for my Chris was a similar effect to a one hour workout at a gym.

It can appear they have 'given up'. But in fact, all too often, they simply can barely raise the energy to breathe, let alone anything else.

That's what I like about finding some project where they can be involved by saying yes or no to ideas for the project, then being able to do it in front of them.

I was reading books to Chris in the early stages. We reached a point where he would simply fall asleep every time within the first page. I admit, I became dejected and stopped. He would occasionally mention that we weren't reading the book anymore, and I would feel bad. Maybe it didn't matter that he missed parts of the story, or if I was reading pages over again.

They are inside that wasted body, they are trapped. Anything we can do must help.

I so wish we had our signatures again, mine used to say:

The only way through it, is through it ... and anything that helps is a blessing.

 

[MaxEidswick]

>I so wish we had our signatures again

me too ... Nikki, anything from David on this? Also thank him for getting jpgs working again!

 

[Diane H]

If you are using Click N Type or a similar on screen keyboard, you can create a macro for your signature. Put the cursor over two keys and it will type you entire signature out for you. I have macro’d everything that I need to type frequently!
Free Click-N-Type On-Screen Virtual Keyboard for accessibility by Lake Software

 

[MaxEidswick]

good idea -- I use Hot key Pro ...