House Arrest

AlzWife2023

It's been a long time since I've posted or visited. It's four years since since I quit working full time. Husband is progressing. He is still continent and feeds himself but can't do much else expect walk within the house and up the driveway; anything else exhausts him. He is very happy. He is driving everyone crazy with the nonsense talk and repetition and the need for constant supervision. Without the pets it would be easier since their flight risk is high with husband opening doors for them. It would be easier if we had central heating rather than a wood stove as he caused two fires this year which thank God we caught before they spread.

The issue I am here to vent about (but really hoping for a miracle answer to) is this feeling of being under house arrest. I can't go anywhere and I can no longer take him anywhere as he is just not interested and he gets sick from the lights in stores, does not have the energy to walk through a store or stroll in town, and gets car sick almost every time we go out because he looks around so much; his eyes are darting from here to there as we drive and he makes himself dizzy. Aside from financial ruin, I am going crazy and getting really sad about not being able to simply leave my house for the simple pleasure of taking a walk or going into town.

Mourning the companionship and love I used to have with him, and also getting really close to God for help and support but really, really, really mad and sad. Help me! If I could snap my fingers and place him somewhere decent tomorrow I would, I think.

EDIT/ADDITION: We have an appointment tomorrow to visit a day program that is 45 minutes drive so I would spend 180 minutes in the car each day getting him to & fro in exchange for four hours of pure peace, which actually sounds worth it. If God wills it, I may be able to arrage some kind of public transportation for the disabled. The day program costs $150 a day so the kids and I will have to figure that out & I really have to go back to work next year so we'll see, but it's high time we make moves to secure care beyond just me & my son and these four walls. If DH knew what we were going through he would not want it.

SunnySD

I’m so sorry.. I’m not at that stage but I’m sure you will get many great ideas from this compassionate group. For the heating.. have you checked into a “mini split “? It offers both AC and heating.

Sending hugs

Sunfish47

So sorry to hear this. My DH tires pretty easily but is still able to walk thru stores. And he does like to get out and go somewhere even if it’s just the grocery store. When he becomes too weak to walk thru a store, I think I will try a wheelchair just so I can get out a few times a week. He’s lost weight so we both weigh about the same now so I think I’ll be able to manage him in a wheelchair if he is willing.

AlzWife2023

https://alzconnected.org/discussion/comment/274289#Comment_274289

The mini split has been suggested. I will look into it. Thank you!

AlzWife2023

I have thought about a wheelchair. DH would MUCH rather stay home and honestly it's the mental exhaustion that gets him, too; the stimulation. If we go anywhere he begs to stay in the car, which I can't do so we don't go anywhere anymore except doctor's appointments (which we have missed recently because I made the mistake of showering him the same day and he could not/would not go to the appointment due to exhaustion). If the kids are here we may go local for breakfast. Very short drive to the one restaurant in town—which is actually a very nice, cozy, community place! Thank heaven for small mercies. Money is really tight too, so eating out is rare. He is a handful outside tho with the weird questions and constant chattering—not very relaxing.

Quilting brings calm

• Eliminate the extra round trip part of the time. Drop him off at the day care and stay in the area. Run what errands there you can, make phone calls, or take a magazine or book to an area dining establishment and enjoy a cup of coffee. Take a walk. Save on gas and allow yourself time out of the house at the same time

White Crane

When DH was at home, the Area Agency on Aging in my area was a Godsend. They provided a caregiver to come to the house so I could get away for a while. They also provided a shower aide who came twice a week to help him in the shower. And there was no cost to us. If you haven't yet, please call your Area Agency on Aging and see if they can help you.

easy23

I paid $35/hour for four hours a day for someone to stay with my husband at home while I went out. That is cheaper than your $150/4 hours plus 180 minutes driving.

kath1054

I, also, hired a private nurse for $25/hour, who helped me with so many things. An angel! Saved my sanity. I could actually wash my hair and take my time without watching a home monitor thru the glass shower door, or go out to lunch, or whatever I wanted to do! Also loved her insights and tips on things I hadn’t thought of.

harshedbuzz

@AlzWife2023

Have you talked to an elder law attorney yet? If not, I would arrange this asap to discuss Medicaid planning. Often these specialists are aware of programs in your state, can help with Medicaid qualifying and can structure assets to mitigate complete financial devastation.

If you live in an area that makes caregiving resources a challenge, would you consider moving to an area that would give you better access to care and perhaps be easier for you in stage 8? Some folks have sold farms and rural/resort area homes to be closer to care. Others have opted to rent their homes temporarily and move closer to better resources while needed.

HB

AlzWife2023

https://alzconnected.org/discussion/comment/274341#Comment_274341

Thanks for your suggestions. He has Medicaid now and we have thought of moving. As I write this, things are calm and smooth. It's like that: a roller coaster. Thank you again for your reply. I look to God to guide and protect us.

AlzWife2023

So true!

AlzWife2023

Yes, i've been thinking of a mini-split but not yet inquired.

https://alzconnected.org/discussion/comment/274309#Comment_274309

Goodlife2025

@AlzWife2023

Regarding the stimulus from riding in the car. You might try one of those window shades you can put on a passenger side window. They make them for children and my daughter uses one for a son with autism. It really helps to limit the stimulus he receives while traveling and is still safe for her to drive.

howhale

I found help for my DW by reaching out locally for care givers. I found wonderful people who I interviewed very carefully who wanted part time work at a reasonable price. I am in north Georgia and found help at about $22/hr. I insist they be nearby so their travel was not an issue and that the hours per day was cost effective for them. Started at just a few hours a few days per week but grew to about 6-7 hours per day every day as she advanced. They became members of the family to us and made keeping my DW at home throughout possible. Best of luck as you travel this so difficult path.