Can't 'get used to' what's happening.

ElaineD

Dear Alzconnected friends:

How do you all do this?    Somehow I didn't expect this at all.  How naive I have been. 

Our HVAC is broken.  For 59 years my DH fixed everything in our houses immediately, I mean obsessively immediately.   All I had to do was say "the faucet leaks'  'the car sounds funny'...and DH was on it.

Here in our Retirement Community we have maintenance staff who are overworked and understaffed.  A couple of times in the past SIX MONTHS a maintenance worker 'looked at the HVAC' and fiddled with it.  NOTHING improved.

Now it's over 85 degrees in NC on a daily basis, and when our thermostat is set at 72,  the room temperature is 77!  Something is very broken.  I have our small room fan blowing directly me all night, in order to sleep.

Last night I said to DH, 'the HVAC is still broken'.  DH said "no it isn't broken, it's blowing out cool air'.  Yes the HVAC is blowing out air, warm air.  DH perceived the air as cool, when it isn't, and he couldn't understand the thermostat

 I tried to show DH that the room temperature on the thermostat registering the room temperature at 77, even tho' the thermostat was set for 71.  The HVAC is broken.

DH didn't understand what I was saying!!!!   The fact that the HVAC was 'running and blowing out air' meant everything was OK.   

I was dumbfounded.  This is more than forgetting things in our daily activities, this was a complete inability to understand the basic principle of our thermostat.  DH just looked at me blankly, insisted that 'black was white' 'up was down', had no emotion about it, just didn't 'get it'.

DH's turning into a stranger.

I'm severely disabled and my health is fragile. I have an infection, the 10th in 14 months, that i MUST deal with first thing on Monday and I feel terrible.  

 I made a mistake on our 2020 Federal income tax return and have spent every waking hour for three days finding the error and working on the complicated correction so that I can file both Federal and a State amended returns.  I have doctors' appointments every day this week culminating with nerve surgery on both knees on Friday!

I'm not in a good place.  I know the HVAC problem minor and fixable, but the devastation I felt last night over this new aspect of DH's deterioration scares me and makes me want to cry (I  NEVER cry).

I just don't think I can do this.  It's way too early in this dementia journey and I'm already overwhelmed and miserable.

You all have so much more to deal with every day, I know.  And the very hardest part is that there's nothing I can do about our situation, there is no way to fix it, and  no one can help me.   Forgive me for rambling on.

Elaine 

Ed1937

Elaine, I'm sorry you have so much going on now. Wish I had some consoling words, but all I can say is that we're here for you whenever you need us. You certainly have your hands more than full.

M1

Oh Elaine, I'm so sorry and I so get it. 

You have more than your share to deal with, I am sorry you are having such problems with your own health. 

Call about the hvac today and every day if you have to- it may need to just be charged with Freon if it's not cooling. Be the squeaky wheel on this one.

Can you talk to your sons about your husband's progression? What do they say/think?

Hang in there, and hope you feel better quickly. 

David J

Elaine, I am so sorry you are in this place emotionally and physically. Dealing with a spouse with dementia is very hard, and anything that interferes with a caregiver’s ability to give care is a big deal. I understand you are living in a continuum of care community. The staff there should be set up to deal with issues like you are having. They may have helpful suggestions or have resources to help. When my parents were in Independent living, Mom needed assistance with ADLs which Dad provided. After a botched surgery on Dad, they both ended up in AL. There were a few people in the assisted living facility who had spouses in independent living and some with spouses in skilled nursing. It may be inevitable that you and your husband have different needs and take different paths through care in the facility. The staff can be very helpful in figuring this out. 

I also have to tell you that the air conditioning in my mother’s room never worked correctly the whole 10 years she was there, but maintenance always came and fiddled with it when we called.

Mona3

Hi Elaine,

I'm very sorry to hear about your situation.  I too have health issues which started prior to my DHs diagnosis.  My doing more things now only compounds those issues which may be your problem as well.  Your story sounds very familiar.  You need to take care of yourself.   I hired an accountant to do my taxes and started paying as many bills as I could thru my checking account's direct pay or thru a credit card minimizing the checks I need to write out each month.   My DH no longer knows how to operate the thermostat, confuses the oven with the fridge and can't find anything in the kitchen and he was the one that cooked all the meals in the past!  He 'thinks' he still cooks and takes care of everything but all he does is tell me what is broken.  I'm very happy and thankful he 'thinks' that way and is happy, but I'm physically and mentally exhausted.  I'm trying to hire as many contractors as I can to fix things and perform the maintenance DH previously did and make excuses about why we need them since DH 'thinks he can do it'.  I'm trying to learn that explaining things to him only making matters 'worse for me'.  He probably won't understand it and will most likely forget it in 5 minutes.  They can't change - we have to change in order to help them.  It isn't easy.  I hope you can find people nearby that can give you a break from the day to day - that would be a blessing for you.  In the meantime, I hope you are able to stop trying to explain things to your DH - It is still a work in progress for me.    

Whyzit

Hi Elaine, I’m sorry you are going through all this aggravating “stuff”. It is so discouraging. I wonder if your HVAC system is accurate in controlling the temperature. Have you tried setting the thermostat at a much lower temp. (like 60 or 65) to see if it responds better? It may need a new thermostat.. Just a suggestion, they do wear out.

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ElaineD

What beautiful, caring, posts from you all came at the end of another battle of the 1040-X.

I think I'll have to find a tax accountant for next year.  Because I'll be going up against the IRS with this, am trying so hard to understand all the processes and the way each entry works.  That used to be easy for me, but not now.

I know crying has many benefits, I'm just so afraid to cry, alas.  I need to find a crying coach!

Elaine 

Joe C.

Elaine, I agree with other comments about the squeaky wheel. I also wanted to give you a heads up on a “possible” challenge you might encounter once the AC is working correctly. DW can not stand anything perceived as cold and that includes the AC. I have the AC set to turn on after she is in bed and turn off before she wakes up. During the day if I need to turn the AC on I will often take DW out for a ride or walk while the AC is running otherwise she will just complain while to cool air is blowing. Good luck.

Mint

(((Elaine))),  Don’t have near as much going on as you do.  Always did my own taxes too.  Found it becoming more of a burden now that I retired.  Hired a CPA and glad I did so.  Way less hassle for me.  Take care

ElaineD

1.  Today it was 79 in our apartment and I 'hit the roof', called reception and demanded that they  'fix it now'.  Maintenance came about two hours later and fixed it! (for now, anyway).  Yes, Victoria, the squeaky wheel got the freon!

2. Alas, another 'failure to understand'.  Yesterday I finally realized that the car AC was also not working!  I automatically dialed the thermostat down as low as it would go (even tho' I do understand that wouldn't make it get cooler faster).  

DH IMMEDIATELY turned the thermostat up at least 10 degrees.  I asked him why, and he said 'the AC blows out colder air if you turn the thermostat down'.  WHAT?  I said know the AC just blows out the coldest air it can until the  temperature you set on the thermostat is reached, and it shuts off.'' DH didn't understand that at all.  Turns out, of course that the car AC was also broken. ;-(

PS, He took the car to the shop and they topped up the freon.  

PPS I have a UTI, and I've had almost one every month for a year and half.  You all know what happens to elderly or disabled people when they get a UTI; confusion, falling, depression, and for me, lots of pain from the infection in my body.  

I knew the UTI was starting last week and the home test strips I use daily were showing it.  When the test strip clearly showed the infection, I went in to leave a sample for culture.

I feel terrible, but must wait until at least Friday for the culture to show which bacteria is causing my UTI (I've had 5 different bacteria), so I'm miserable.  It is so hard to be positive when I feel bad.  But at least it's 72 in the bedroom now!

PPPS  You are so right, Joe C.  DH is getting bathrobes and  covers because he is cold!  Oh, and he's wearing shorts, of course and won't put on long pants.  Sigh.  

But at least it is no longer 79 in our bedroom.

M1

Elaine, a gentle suggestion to be the squeaky wheel with your doctor too: no way you should have to wait until Friday for relief, call today and tell them you're too sick to do that. You don't want to end up septic. I would ask for a urology referral too.  So sorry but glad it's cooler!

LadyTexan

Dear Elaine.

I am so sorry for what you are going through. I have been so distracted by my DH's catastrophic reaction to the missing ammo that I hadn't read your post until today.

Your plate is over flowing with too, too much. The caregiver heroes here have provided wise advice. SQUEAK! SQUEAK! SQUEAK! Consider bringing in assistance as you recover. Consult with a CPA.

My DH is always cold. Our thermostat is on 80. It is miserable. I usually go to another room and turn on the ceiling fan. 

God bless you dear. Take care of you.

harshedbuzz

ElaineD wrote:

2. Alas, another 'failure to understand'.  Yesterday I finally realized that the car AC was also not working!  I automatically dialed the thermostat down as low as it would go (even tho' I do understand that wouldn't make it get cooler faster).  

DH IMMEDIATELY turned the thermostat up at least 10 degrees.  I asked him why, and he said 'the AC blows out colder air if you turn the thermostat down'.  WHAT?  I said know the AC just blows out the coldest air it can until the  temperature you set on the thermostat is reached, and it shuts off.'' DH didn't understand that at all.  Turns out, of course that the car AC was also broken. ;-(

PS, He took the car to the shop and they topped up the freon.  

I am so sorry you have so much on your plate while feeling physically miserable. I hope medication can resolve the UTI quickly.

That said, the idea that you are allowing you are allowing a man who doesn't understand how the car's A/C works operate that vehicle is worrisome. There are so many way this could go sideways. 

My own mother, who does not have dementia, will be in court next week because she's being sued related to an accident she caused 2 years ago. She is being represented by the insurance company and will likely be financially OK- but the process has been upsetting all around. I would not wish it on anyone. 

HB

abc123

Dear Elaine, you are correct. Realizing our LO’s losses is devastating. I’m so sorry this is happening to you and your husband. This disease takes everything from us. You have us here for emotional support. There are many people here with years of experience and wisdom, they will help you the best they can. Unfortunately we are all on this journey together. You will also discover that the people closest to you will not understand what you are living through and what is happening to your husband. Unless a person has walked this walk, they have no idea. Remember you have us. I’m truly sorry about your situation. I hope your HVAC is repaired soon.

terei

Elaine, you may have a handle on your constant UTIs but there are a lot of people who take D Mannose (preventatively) with very good luck in case you have not tried that yet.  It is not a well known treatment IME

jfkoc

I think if you don't cry you will explode. Crying does not mean loss of control nor does it mean failure. It is a means of relief as is screaming in the shower.

You not only have a lot on your plate it is piled sky high!

French

Elaine, not sure somebody can get used to this.

I can’t imagine how I would manage if I also had health issues. I really hope you can get better after your surgery. 

About taxes, I have the same issue here, every year I spent almost 2 weekends days to prepare everything. 2 years ago I did mistakes and we had very high penalties. Now I am very good at declaring our incomes and everything else... I even help others. 

Hope you are better now

Stuck in the middle

Elaine, I can get used to almost anything, but not when it changes all the time.  One day you're helping fill a med set, another day you've taken over filling it, then you're reminding her to take meds, then you're watching her take the meds so after reminding her or she'll comb her hair and come back to the den.  Next you're locking the meds up so she doesn't take yours, or a whole bottle.  And it's not just meds, our whole lives are like that.  

Little drops of water, 

Little grains of sand, 

Make the summer cottage 

More than I can stand.