I miss home

Howaboutnow

Hi All,

I’ve always loved being home. Everything about it. Creating a pretty space, cooking, keeping things clean and orderly, relaxing in it after work and on the weekends. I miss it. Because for years now, it doesn’t feel like home.

All Mirrors and some pictures are taken down, blinds drawn that reflect the “goofy son of a bitch” he sees delusion-ally, knobs taken off gas range, furniture moved every night to try to direct to the bathroom (not 100% proof), doors to rooms locked, bedroom i can’t sleep in anymore, office i blocked off from random peeing, access to garage locked, things hidden so you can actually find them when you need them, anything that could be used in some manner unsafely gone from sight, and on and on

I miss home. Cause now it feels a bit institutional to me, confining, a borderline mental and physical trap. It’s not a place for fun and creativity and relaxation. Anyone else?

Mint

I’m so sorry, know it is so very hard.

Beachfan

I am sorry. I never had those issues, but I still missed "home" once Alz set in. Thanksgiving and Christmas, birthdays at home with hordes of screaming grandkids, home at the beach with seafood fests and crab legs, shrimp and clams spilled out over a table, coming home after a day of golf, an evening out........ Once Alz took over, home remained a pretty place, neat and tidy, but much of the joy was gone. DH was "home", but he was gone and then he left for good. It's just a big fat mess all around. Stay strong.

ImMaggieMae

Home is still certainly different since Alz/dementia took over. With an open floor plan it’s too difficult to put a lot of things away so DH is watched and followed 24/7 or whenever he is awake and diverted from anything that could be harmful. Since he is pretty cooperative other than going back and forth to the bathroom or the patio many times per day, the house still looks pretty normal. But at some time, probably soon, we will have to put a bed downstairs and move some furniture around to do that. I will likely have to sleep on the couch. But we’ll do what we have to do. It is what it is. This is his home too.

SDianeL

Yes. We were full time RVers traveling and enjoying life until 2 years ago. We sold the RV, moved into a small apartment and I feel like I'm in prison. Can't go see my kids because they work and caregiver only comes during the day. He would hate going to day care so I can't do that. I have also made some changes. Put extra lights to guide him to the bathroom. Learned to sleep with lights on. Moved rugs off the bathroom floor because of dribbles. Got an alert to put by the bed so I will know if he gets up at night. I have respite care but nowhere to go. But we do what we have to do. We know how you feel. Sending hugs.

Howaboutnow

Thank you all. ❤️ DH has been talking about going home for an hour…..doesn’t feel like home to him either I guess.

Denise1847

I am so sorry. This is a terrible disease that devastates the patient and the caregiver. I haven't yet had to make huge modifications to our home. I just have to put signs on the dishwasher to not open it when it is running and the washing machine. I know the changes are coming and pray every morning for a good day for my DH.

I find that I used to mourn our old life and was angry that it was over. I still have moments of sadness when I see the deterioration of my DH. He would be mortified if he knew what was happening to him. I feel like We have taken a journey away from what was and can see it disappearing to be a distant memory. At this point, I just take one day at a time, have no expectations about the future and live in the moment. I really try not to think about anything that brings me sadness so I don't cry and keep my wits about me. I am sure this type of coping is going to backfire on me at some time, but it works for me now until it doesn't.

cvannor

https://alzconnected.org/discussion/66750/i-miss-home

omg, yes, I deal with this every day. I had the illusion that if I couldn't control what was going on with my DH and myself, at least I could control the space I live in. It was way that I could be peaceful in the midst of chaos. Alas, nope. He constantly is moving things where I can't find them. tying random things to random things, me trying to chain lock doors that he still gets through, in sum, no peace. I thought my 50s would be the time in my life I could finally enjoy and relax a bit. Nope. This is the worst thing I've ever had to endure and I don't know how I'm going to do it.

ThisLife

Howaboutnow and cvannor: Oh yes, yes, yes! Things moved, furniture moved, no papers out that are important, lights off (he wants it dim), household arranged to facilitate as much "independence" as possible. I placed H Sept 1st. I have been amazed at how little of the house I lived in. I'm gradually beginning to use the living room and moved my office back into the designated area instead of a small card table in my bedroom. I can leave paperwork out to remind me I need to deal with it. I'm still feeling a bit uneasy here but also enjoying the freedom to live in a reasonable way.

Ed1937

I fully understand what you mean. Having a home is so much more than having a house. Whenever I see the title of this thread, I think "He gave her a house, and she gave him a home." I guess you could say that was us. I long for a home too, only for different reasons. But I'm a fortunate man. I still have a house.

CStrope

I have two things that make me not feel "homey" in my house. First off, the lack of laughter and light hearted conversation. Since DH has FTD, his aphasia is horrible so there have not been relevant conversations for well over a year. Second, the adjustments made to the physical house itself. The locks on the cupboards, night lights everywhere, and the very loud alarm that goes off if/when the front door is opened.

Howaboutnow

Right, the comfort of home offers a safe place to take a deep breath from the outside world, a place that holds the ones you love, and oh yes….the very much missed sound of light 2-way conversation and joint participation in anything at all, big or small. Missing that home, while gratitude is always with me for the house.

I guess what i’m feeling is that the physical changes we need to safeguard and accident-risk-reduce our homes is a physical manifestation of the mental sloth this journey is. The home is missing physically and mentally in my life, if that makes sense. Cvannor, as you say, no peace.

ThisLife,,,,i hope you can enjoy stretching out in your home again 😊 I understand how much you’ve limited your spaces out of love and necessity.

Joydean

I understand what everyone above have said. What CStrope said, I used to always say “our home “ but now when dh asks where are we I answer our house, because it doesn’t feel like a home. I don’t know how many times a day he will ask that same question but my answer is always the same. There is no conversation, no more laughter, I still act silly to see if I can at least get him to smile and when that happens I count it as a big win. I get it when our love ones say they want to go home because I want my home back to.

Quilting brings calm

all of you make good points. This is one of the reasons that we did not offer to bring my parents into our home. There were several valid other reasons ( house set up, open stairs to basement, cornfields, no one home during the day etc) that also meant our home wasn’t a good fit… but the fact that our home is our sanctuary from the stress of the world was a big factor. I need that sanctuary. My physical, mental and emotional health would suffer without it. I don’t even like guests in my home overnight.

Howaboutnow

Quilting brings calm…..i understand needing to consider the risk of losing your sanctuary as one of the factors in making your decision about your parents (and the part about overnight guests 🤪 I’m 100% the same).