Change is a brewing

[shelleynshaggy]

Hello Everybody ~~

I have been lurking in and out of the forum lately - just wanted to check in.

The last couple weeks I have finally committed to our next big change - separate bedrooms. It has been an idea I have been chewing on for months - even buying myself a new comforter on Black Friday. However, that comforter still sits in the bag in the garage. I never had the start to bring it in.

I brought it up a couple months ago and Jim was 100% against the idea. I reasoned that we needed a spare room when mom needs to come stay and help and other reasons.

This time Jim comes back with what if the basement floods (the room the girls will claim in the move.) My reaction was really? Of all the crap that you have no valid points on YOU come up with this. However, it has only happened once or twice in 13 years when the sump pump quit - so I decided that though a good point we could work with it. But I dropped it.

Again I stormed the subject again after finding more stuff missing. I decided I need a room where I can lock stuff up - a room of my own. However, began feeling guilty again.

Finally I started seeing a psychologist (after over 18mos of fighting it) and she said it was a must for my and one of my only hopes to get my sleep disorders in check. So I brought it up again. Jim is still not on board. I played kinda dirty and got the girls on my side. Now they are hyped up about getting a new room. We have picked out a "motif" and everything. I called his Aunt and told her she had been drafted to my team so she brought it up and started to help ease him into the idea. Tomorrow (or today actually) the Easter Bunny is leaving the girls their new comforter sets.

SO - I guess my question for those of you who have been through this - is how do I help him accept this change and is there a way to make it easier on my conscious? I am excited but reluctant at the same time. It will still be several weeks or a couple months until "moving day."

I am not sure the girls have put 2 and 2 together to understand that mommy is moving into their old room. I know it is a necessary change but......

 

[Miss]

For us, it was rather automatic when the hospital bed came. I simply put the entire king sized bed on the street - mattress, headboard, bedding and all (picked up within the hour by someone). I set up a double bed from my mother's house (she died the week my husband started testing). None of this is easy. My heart goes out to you.

 

[Katie C]

This is where you take advantage of the emotional flattening... my guess is even though Jim is fighting it now... if you stop "asking permission" and just do it... he'll quickly just let it go. I know that hurts, believe me. I WANTED Glen to say no don't move out! But I did start sleeping better. And as far as the guilt.. honey, you've got two beautiful little girls who need your best, and they won't get that until you start getting some decent sleep.

 

[LornaDoone]

How did your husband's FTD start out? Did it develop after the ALS or before? Double whammy for you ladies.

Edited to add: Has the FTD made anything easier?

 

[Chase_Corin]

We did the bed change last week.

The hospital bed was delivered and Mom and Dad's queensized was moved into my grandmothers for guests. Dad was very nervous sleeping in the room alone for the few days it took to get a single bed delivered and the old bed moved into my grandmothers. (Due to the fact it has rained every day for a week)

My mom slept in my brother's room for those few days but she found that she didn't really sleep she always had an ear open in case dad had trouble.

She now sleeps next to him on a single bed and they are both sleeping better. Thankfully she is still able to get him in and out of bed unassisted because we had a power outage at 4 am and dad's breathing machine went off and the bed deflated.

Have you thought about getting a single bed and putting it in the same room as your husband? I am just thinking that he might be nervous about being alone like my father was. You also might sleep better knowing you can hear if anything happens.

 

[chriss]

When we went to a hospital bed we got a companion bed which I have pushed up against the bed. The companion bed is on wheels so is very easy to unlock and move to the side if we need access for personal care. I have gotten used to sleeping through all manner of bipap noises but it took a while. Sleeping in a different room would not work as often he needs help during the night eg repositioning his foot or taking off or putting on blankets. Much easier for me to quickly do it from the side of the bed than having to get up and come in from the other room. I also think he feels reassured that I am there nearby,

Thanks

Chris

 

[Katie C]

Won't answer for Shelley but to the question "Has the FTD made anything easier?" very simple answer: NO!

 

[Cereus]

Shelley,
I got so worked up and felt very guilty with every change but my hb usually took them better than I had anticipated. I hope that's the case with you. You have to get your sleep!

 

[Bad Balance]

What things do you need to lock up?

 

[Katie C]

General answer to Bad Balance's question: It depends on the person of course, but things that need to be hidden or locked up: car keys. Important papers so they don't disappear. Food items that could cause choking. Alcohol. Medications. Credit cards. Knives or other sharp objects (Glen never did understand that with his hand weakness it was dangerous for him to use a very sharp kitchen knife.) Also doors need to be locked and/or alarmed to avert wandering.

 

[shelleynshaggy]

How did your husband's FTD start out? Did it develop after the ALS or before? Double whammy for you ladies.

Edited to add: Has the FTD made anything easier?

His FTD started long before the MND symptoms. Looking back as far as 3-4 years prior. Though our PCP really noticed the FTD symptoms (though he did not know exactly what they were a symptom of) long before I did. To be honest I was so mad at Jim before his diagnosis (plus working 50-60+ hours/week) I just thought he was being an idiot!

Definate symptoms: In 10/2006 he lost his job of nearly 12 years for no good reason after being demoted. We had several rationalizations for the "why" at the time. He went on to loose 3-4 more jobs during the next few months. Never catching on though it had been work he was doing all his life (he was a trainer and cook at Applebees and other like places.)

In summer of 2008 he got into a serious car accident pulling out of the drive. He hit our neighbor's house and both cars with 10 people outside nearby (including me and a 1 yr old Ruthie sitting just feet from the crash site. Thing is - he says the brakes went - so he jumped OUT of the car?!?!?

Final straw was in Oct 2008 - while watching the kids (he was Mr. Mom at this point) he watched Ruthie (then 18mos) cross the street infront of a car and did not respond. The neighbor driving jumped out and got her while Jim watched - no reaction. Luckily the neighbor later came and confronted me about it. I thank my lucky stars for her everyday.

I still thought it was only adult ADHD or depression when we went to the neuro. The Dr had him diagnosed with FTD literally in minutes and MND by the time we left (suspected ALS). I thought the guy was full of bologna - Jim didn't have any real physical symptoms. The dr pointed out subtle fasiculations, positive babinski signs etc. 6 weeks later Jim's gait changed.

So so long winded ---- no short answer came to mind!

 

[shelleynshaggy]

What things do you need to lock up?

Well, let's just start with the "important papers" and stuff.

I have come to find out that literally every important paper we own is GONE - car titles, mortgage papers, etc. I do have a lock box - but I need a place where I can be "openly organized." Mail is constantly tossed. Calenders thrown away. Jim loves to "clean." Kitchen pans in the laundry room, laundry in the garage, parts of my stuff in the basement while others parts (of the same item) are in 2-3 different rooms!

AND put it this way - I have not had my wedding band AGAIN for at least 4 months. Last time found it in his drawer.