Mother-In-Law : “We don’t like each other”.

Daughter-In-Law: “I never said that.  I don’t know why you don’t like me”.

Mother-In-Law: “I don’t know why I don’t like you either”.

IF that was a conversation had between a mother-in-law and a daughter-in-law and that DIL was the sole caregiver for that MIL’s son I would be appalled. I wouldn’t blame the DIL for being absolutely blown away and hurt. I wouldn’t be surprised if the DIL spent some days crying and sleepless night wondering what else she could do to earn a little respect from the MIL. I would expect the DIL to be shattered by the statement. I wouldn’t expect the DIL to forgive such a cruel and heartless comment very quickly.   hypothetically…

– xoxo Victoria

Yesterday was a long time coming.  

We finally received some much needed equipment from hospice. It’s not hospice’s fault we just received it it’s our…MY …fault we didn’t get it sooner.  

We now have a hospital bed in the living room, with an over the bed table and a hoyer lift (that is hiding outside with the rest of the, now non useable, equipment until Duane realizes we need it…give it a few days). This past weekend there were multiple times when I couldn’t stand him up, his legs have gotten so weak sometimes that they can no longer bear his weight.  Having this bed right next to the couch means I can basically just twist him to the bed for a nap or to lay down in a different position.  He has yet to try it, but hopefully he will soon.  The lift will be harder for him to give in to, but we are probably only days away from that as well.  

He said we didn’t need the equipment.  He said if I just did things “right”, if I just “tried” or “used my head” we would be fine.  And you know what  – we haven’t been fine for a long time and we’re still not fine. I have pushed things and it always backfires so this time I waited it out.  We talked about it, he said yes, he said no … and then I couldn’t stand him up.  I made the call and ordered the equipment.

Part of the reason I think I waited so long was because I felt like I was failing him.  I was letting him down because he didn’t want it and only I did.  I thought maybe he was right, maybe I was not trying hard enough, maybe I could have tried harder.  I have spent the last week or so going back and forth, crying, with a hurt back, knee, hip, shoulder…. Waking up with a headache every morning and I realized I am not failing him if I get the equipment WE NEED, I am failing myself if I don’t. 

– xoxo Victoria

I started this blog not only to keep our friends and family updated but share our story with other ALS families, especially those just beginning this journey.  I started out wanting to represent the disease as what it is, but still show that there is so much fun to go out and have.  I mostly lean towards the positive when I write, in the last 24 hours I have realized that I maybe doing a “disservice” to some by not addressing some of the most important issues that are major in this complex situation. 

There are a few subjects that I have avoided writing about.  I didn’t want to offend or cross any lines with anyone.  I also didn’t want to come across as complaining or feeling sorry for myself.  I have tried to be respectful of everyone involved.  I have been very careful about not saying something to someone that I may regret later.  I make sure everyone feels welcome in our home and there is always food and drinks available for them.  (I don’t think I should have to wait on them hand and foot, but that is another post). I have told the truth and been forward with everything surrounding Duane, his nurses and the disease’s progress.  Unfortunately others have not treated me the same.  Yesterday was my breaking point… 

So in the next day or so I will be posting a blog about in laws; the ins and outs of navigating the craziness and emotions of ALS.  Wish me luck as I try to tell my story without offending anyone (not that it really matters anymore) and not come across as petty or rude.

– xoxo Victoria

This is what Lionel was talking about… this is an easy Sunday morning. When you have Spencer, Kloe, Travis on FLW Fishing show and tons and tons of sweet breakfast delights how could it be bad. Days like this when Duane is smiling and laughing and having a great time make my heart happy!  Once again thank you Spencer!  (Thanks for my birthday wine and candle too!) 

– xoxo Victoria

This is my new venture. After struggling for the past two years I realized there needs to be a place for us young caregivers to go for support and knowledge.  I dove head first into caregiving with NO medical training at all. I could have used a place like what I am hoping to create.  Please let me know if you have any thoughts to what I should discuss or topics I should introduce.  I appreciate each and everyone of you and all of your support and love. 

The Young Spouse Caregiver Alliance was created to help connect and inform young spouses and or significant others on their new role. As young spouses we have a different set of needs, questions and issues that older spouses and for hire caregivers don’t have. Individuals who have the taken on the massive role of caring for their spouse or a signifanct other in their time of need need a special kind of help and love.

http://www.youngspousecaregiveralliance.com

– xoxo Victoria

Our house was built in 1953.  The pipes are 64 years old – if there are even pipes still down there!  The owner is waiting for his daughter to graduate high school (1 more year) and then will demolish it and rebuild.  

Every 5 or 6 months the plumber has to come out and clear the drains, we are getting to that point now.  In between when we get a clog I buy whatever brand of drain cleaner is on sale and pour it down.  And it ALWAYS works.  I pour a bottle down, let it sit over night, run some hot water in the am, clog gone.  Well this time Duane said no I couldn’t do it because it doesn’t work.  I asked him if I should just call the plumber then and he said he didn’t know.  But he couldn’t leave it there, instead he said in front of my parents that I “need to stop waisting money”.  I was so mad at him.  (He thinks that because I don’t work it’s his money.  But that is a WHOLE different blog post … or two).

I poured the the stuff down the drain and guess what it worked.  We are clog free. 

– xoxo Victoria

I hate microwaves.  I haven’t used one for a few years because they are bad for you and bad  your food. I normally just heat everything up in a dish in the oven or in pots and pans on the stove…we don’t have a dishwasher.  I already do enough dishes. We got a microwave.  We are at the point where the negatives of a microwave are better than my attitude about cooking and constantly reheating everything (Duane’s food needs to be reheated a few times because he chews slower now) and doing dishes.  It’s all give and take.

– xoxo Victoria

Let’s be honest – everyone who knows Duane knows that he doesn’t apologize easily – if at all, and never mind admit to being wrong.  hahahahaha  

This is partially my fault because for the last decade I have very rarely “stood up” to him mostly because I don’t care that much  – I always thought if he needs to be right – fine.  Well the problem we now find ourselves in is he lashes out a lot and a lot of times he is wrong.  It is the disease and I am aware of that but it becomes overwhelming at times.  I have tried to say something a few times but I never have before so now in his mind (my opinion) I’m am being “mean”, “not nice” and “rude” (his actual words).

So now what?  Every few weeks he likes to “have a talk”.  It just happened tonight.  He said I “watch him struggle”  I know he needs help and I don’t help him.  

What??? I tried to ask him for examples and explain what he was saying, but in the end I said ok – you’re right I will try harder and pay more attention to you, I love you, good night i’ll be in in a while. And all he did was shake his head in disappointment and say tomorrow. 

– xoxo Victoria

Yes – we get up at the butt crack of dawn to watching fishing live on the internet. About once a month one of Duane’s BFFs is live talking about fishing for 3 hours.  Sometimes we get up at 5am, sometimes 5:30am… They sit like this for 3 hours watching people fish and listening to Dupree talk… This makes Duane’s month, puts him in a good mood for the whole day!! 

– xoxo Victoria

I got my own bed today.  The mailman delivered it in a box and within minutes, my very own twin bed.  For the last week solid and for the last two months on and off I’ve been sleeping on the floor. The floor sucks.  We have a super nice, very expensive sleep number bed, it is heaven and I have done everything I can to stay sleeping in that bed with Duane but it is no longer possible.  

When I sleep in the same bed we get about 80% less sleep than if I sleep on the floor next to him.  If I am in the same bed he needs to be rolled about every hour, which when I’m sound asleep, sometimes makes me upset.  And to be perfectly honest I have no control over being cranky after getting up 8 times a night, every night, eventually I’m gonna have a little breakdown one of those times.  Well Duane thinks I should never be tired and not need sleep and always be super happy when I get up in the night.  NOT POSSIBLE.  It then turns into a “fight” with Duane telling me I’m not nice and I’m mean and frankly I can’t handle that anymore.   If I sleep on the floor, Duane only needs to be rolled 2 or 3 times a night – which is completely manageable, I have yet to get upset rolling him when I sleep on the floor.  Except sleeping on the floor sucks.  It’s not comfortable, it’s cold and I have thoughts of bugs and mice (which we don’t have) crawling all over me.

So I bit the bullet.  I ordered myself a bed.  I have delayed doing so because every time I say I am Duane convinces me to sleep with him in the bed again…and the whole cycle starts over.  So I did it.  I got on Amazon and ordered a bed.  It is SOOOOOO comfortable. I will sleep well tonight.  

It is sad too.  I will no longer sleep next to Duane.  This is something we should have done months ago, but it was so hard to finally give into it.  

Get cozy tonight – you never know when you won’t be able to!

– xoxo Victoria