Trying to keep up with life...

RetiredTeacher

We are all in various stages of this horrid disease. Some caregivers spend most of their time on their LOs needs every day. Others who aren't as far along on the journey modify the environment and provide support as needed fo LOs who are still able to do their ADLs. I'm in the later group and am trying to stay on top of everything since DH really can't help anymore. I have always done all the cooking, cleaning, shopping, bill paying, banking, everything. He used to be handy and was able to fix things, took care of the vehicles and was on top of home maintenance. That has been gone for a long time. I'm able to handle everything i used to take care of and his needs but lately it's all the other stuff he used to handle that is weighing me down. We need 2 new HVAC systems this spring so I'm learning about efficiency and reliability. I had to call AAA yesterday to jump start the nice pick up truck we don't drive frequently. Today I tried to start the RV that needs a smog check before i can register it. It hasn't been driven in a very long time...it was dead. I had to learn how to hook up the battery charger and even find the hood release latch!! Thank goodness for google because DH couldnt remeber. All this other stuff on top of everything else is A LOT. We also need to replace our back fence this spring so there is that to deal with.

Just when i think i have stuff handled and i can manage all this, then comes the extra stufff and no one able to help me. I feel so ill equipped to deal with the things i know so little about. I will regroup and take another run at managing these extra duties. I have calendered every Thursday to go for a long drive with DH in the tuck and when we get back I will start up the RV and go hang out there with DH for a while. Although DH doesn't drive anymore and we don't RV due to his declining mobility, I really don't want to sell them. It would be less work for me but they represent life for me after this awful disease takes my husband. I need to have hope for my future that my life will someday be normal again and I will load my kayak in the pickup and paddle on the lake and I will once again take the RV on the road. Ty for letting me vent. Just trying to keep up with everything. I'm sure many of you can relate.

Kat63

I can relate as my DH and me handled the duties pretty much as you and your DH did. I have had to handle everything for about 5 years now. I guess I look at it like I’m stronger and more capable than I thought I was, as I am handling everything and being fill-time caregive to my DH. From what all you said, sounds to me like you are doing a very good job too of handling everything. We are here for you.

Chance Rider

Oh, how I relate! My husband is late 4, maybe early 5. Still able to handle his personal ADLs, though no longer helps with our house or 10 acres. Since I can still leave him for a couple of hours a day, I do all the shopping, cleaning, and taking care of our property. My focus the past several weeks has been to have safety improvements and deferred to on the house taken care of. Next up, this coming week, get the garage cleared of 25 years of my husband’s accumulated “stuff” (junk), remove living room furniture and carpet. I’m taking advantage of this time also to attend to my own doctor/dental appointments and mental health. It never ends.

Your post led me to rethink getting rid of my kayak and camping trailer. Hopefully there’ll be enough of me remaining at the end of this to resume life as I used to know it.

It sounds like you have a good plan, and more importantly, keeping hope for a future. Well done, hang in there!

RetiredTeacher

Hopefully there will be life for all of us after this us over. Keep the kayak and the trailer for now.

JC5

I too can relate! The things I’ve had to do that were never on my “to do list” is eye- opening. Yes I do all the cooking, cleaning, financial, shopping, car maintenance, outside maintenance raking, shoveling snow, seeding cutting the lawn, on and on. I even turned my 95 year old dining table upside down to repair the pedestal legs that were coming apart!! We all need a helping hand but who is there to help?
My saving grace - my kayak!! Can’t wait till summer ! 😊

Belle60

I am in the same boat-so to speak!. My husband and I were avid kayakers for years. We own three kayaks that are just sitting in the garage. Last year, I decided we would go kayaking but I had to load and tie down the kayaks in the truck. Actually surprised they didn't going flying out the back when we were driving down the road. We have heavy kayaks not the light ones so handling them was difficult. But we got to the lake and on the water. But it only lasted 15 minutes and he wanted to turn back. Worried and anxious the whole time. I tried to encourage him to keep going and to enjoy. At least he was able to paddle. I was afraid he would not remember what to do fall out or not be able to paddle back. I am hesitant to sell them but I think it is time. I would not go my myself. We enjoyed them for many years very sad but I don't think we will be going anymore. Just a reminder of something we can no longer do because of this damn disease.

brupt30

https://alzconnected.org/discussion/comment/263485#Comment_263485

I'm in a very similar situation overall but can't get rid of my husband's old junk because he is always around. Sometimes I get up early and take things out to the trash before he is aware of it. Once things disappear he never remembers them, but he gets very upset if I throw anything away.

Chance Rider

https://alzconnected.org/discussion/comment/263504#Comment_263504

Oh, THIS! In theory my husband’s son is picking him up Friday for a weekend visit, while I have a crew coming in to clean 26 years of JUNK from our garage. I’m not able to throw anything away when he’s here because he gets so mad at me. Sigh… we do the best we can!

brupt30

https://alzconnected.org/discussion/comment/263506#Comment_263506

I'm going to have to figure out a similar game plan. This kind of deception is so new to me, but truly necessary!!

SDianeL

is there any way you can hire some things done to free up time to take care of other things? I had groceries delivered by Instacart and hired housekeeping help every 2 weeks. I didn’t have a yard but if I did I would have hired a lawn service. There is no way you can do it all without it taking a mental and physical toll on you. Keep the RV. I miss our RV life. If I wasn’t fighting cancer I’d get me a small RV and hit the road! Hugs. 💜

Biggles

What is it with these kayaks, I had 3 just sold the two blow ups and kept my favourite fibreglass one with all my gear, ….. hope springs eternal. As for all the other stuff I think we are wonderful, the skills and talents we now have, along with all the domestic stuff I can now mend fences, change gas bottles, talk with conviction to bank managers, plumbers, all sorts of tradesmen and so the list goes on. Brilliant definitely stand tall and pat ourselves on the back (no one else is going to).

jgreen

https://alzconnected.org/discussion/comment/263504#Comment_263504

I am in same situation, @brupt30!!

DH has collected ‘stuff’ over our 50+ years of married life and cannot part with anything! Our garage and back porch are ‘filled to overflowing’ plus we have 2 small storage units also full. I have a couple of wonderful neighbors who have asked if they can help with anything and next time they ask I am going to see if they are interested in helping me sell some of his stuff - starting with the storage units we occasionally visit. DH is constantly on the porch or garage looking through his things. I think it gives him a sense of comfort and stability so I have to go easy if I throw things out when he is sleeping.

Take care. We all have to choose our battles.

Goodlife2025

I am with you all in the kayak club. I think this year will be our last to try together but planning on keeping them to hopefully enjoy at a later time. Last summer my DW's family took her to Disneyland for a week. A glorious week I had so many loads for the dump, metal recycling, donations to non profits, and trash. I remain thankful I was given this time to sort things that would never get sorted with her here. Chance Rider I am hoping your weekend help is just the thing you have been needing….. keep us posted.

Chance Rider

https://alzconnected.org/discussion/comment/263577#Comment_263577

Thank you! I’ll definitely share the outcome. It’s already a huge win in that this crew, who I had hired for construction work on our home, volunteered to help clean the garage. I will of course pay them. It was the gesture of recognizing my need and wanting to help that I so appreciate.

Halloween weekend my stepson took his father to Disneyland for a few days. I used that as an opportunity to purge things from the house. It sounds like you were pretty successful while your DW enjoyed time with family.

In a different reality it would have been awesome to meet fellow kayakers for a fun paddle/pedal. (My Hobie is a pedal type because I have a bad shoulder).

RetiredTeacher

A kayak meet up in the future would be a nice way to put faces with screen names. I too have a hobbies I love and a sit in. I enjoyed them both and will again. Keep the faith