It feels like my world is falling apart

White Crane

DH has been in MC since January 23rd and I miss him terribly. The house is so lonely and nothing feels the same.

I finally had my appointment with the elderlaw attorney yesterday and felt so much better and optimistic afterward. That didn't last long though. Reality isn't always easy and it isn't always pretty. She explained everything to me about getting DH certified for Medicaid. Right now he doesn't qualify so I need to spend down. Since I know I need to find a smaller place to live she said to start looking for a house to buy. I looked online and there are a lot of houses available but not too many in my price range or in an area I want to live in. We have lived in this house for over fifty years! All of my memories are here. I know it's too much for me to take care of and it needs quite a few repairs but it is home. The thought of moving is depressing and sad. The thought of trying to do this without my husband is doubly sad and hard. I'm about to cry as I write this. Everything in this house reminds me of him...and of us. My kids are encouraging me and trying to be helpful even though they don't live close. Friends are also encouraging and supportive but at the end of the day I'm still alone.

Added to this, my doctor, who I have gone to for twenty-nine years, is retiring. It seems like everything that is familiar in my life is going away and I am having to find a new path. I'm surrounded by loving family and friends but I still feel so alone and scared. All of this feels so overwhelming. And I miss my husband so much.

Brenda

listb212

I can't even imagine the pain you are going through! I was a caregiver for my mother who just passed away and her husband had also passed away back in November. I really felt her pain and tried to comfort her and be there for her. My heart goes out to you so so much! I don't have any advice. I just want you to know that someone cares and understands.

trottingalong

https://alzconnected.org/discussion/68448/it-feels-like-my-world-is-falling-apart

I am so sorry you are going through this. It would be near impossible for me to leave my home. I know when my first husband passed away (when I was 32), I was told not to make any big decisions for a year. When we are in mourning (which you are), everything becomes overwhelming. And the loneliness of grief compounds everything. At my age today, it would even be so much more difficult for me emotionally. Are you able to take a pause and not think about selling your home immediately? One small step at a time?

Joydean

Brenda I am so sorry. I can’t imagine how hard this is right now for you. I know the time for me to have to make decisions but I just can’t or want. To leave out home, I go outside and look at all we did together, things we did inside, sometimes I can almost hear us laughing, just life we enjoyed. But now that’s all gone because my dh is in stage 7 and I stay exhausted. I do know God is still in control and He is watching over us.

I will have to sell our house at some point because I have looked at MC places and there’s no way I would be able to pay those prices for more than a few months. My prayers are with you and I’m sending you a virtual hugs!! Blessing to you!

M1

Brenda i completely understand. I too am weighed down by grief despite the nominal supports being in place. This farm was her pride and joy and the memories are in every stone and slab and flower. It comforts me and overwhelms me at the same time. The garden begs to be cleaned and planted, but my heart is not in it without her by my side. I don't know how I'll ever find the energy to do what needs to be done, and yet I'm stuck in limbo, unable to move in any direction except back and forth between my lonely bedroom and her MC. I don't know how I'll ever feel optimistic again. And I used to consider myself a pretty upbeat sort.

Hang in there my friend.

ghphotog

I might have misunderstood my attorney but I thought she said to not sell the house until the Medicaid financial snapshot was complete or the capital gains would be considered an asset as far as Medicaid is concerned. I'm in New Mexico so it might be different here.

Ps, I just py DW in memory care and so I understand how you are feeling.

sandwichone123

I also live in a house that's too big for one, but I love both the house and the location. I am considering renting out one or two of the rooms to make it work, while benefiting my community which has a housing shortage.

tetwoman

Brenda - I hope it helps a little to be a part of this community. I know it helps me.

Today my son and I escorted DH to MC. I feel sad, relieved, and grateful that I can pay for it, and that he got the only male bed left in this facility. The loneliness hasn’t set in yet, but I know it will.

I decided to make a schedule, and try to structure my day because I know I would just sit in front of the tv all day otherwise. So I am going to practice the piano for an hour each day. I am going to go back to the online language class for an hour each day and I am going to walk for an hour each day. I haven’t figured out how much and when I will see my sweet DH . I want him to adjust to his new life but I don’t want him to feel abandoned. And it is so damn painful to leave him.

Anyway you are not alone in your situation and your feelings. Hang in there - I’m told it gets more tolerable.

White Crane

It helps so much to know you all understand. M1, I'm in the same limbo of going back and forth between my lonely bedroom to the MC. It's hard. Joydean, my heart is with you at this time. Right now I feel a deep sadness knowing this is how it has to be. ghphotog, I have followed your posts and have been praying for you. We live in Missouri. The lawyer told me that if I don't find a house now, there isn't going to be enough money left to move. As long as I put the money from the sale of this house into the new one it should be okay. Thank each of you for being here and sharing the journey and listening.

northernlady

https://alzconnected.org/discussion/comment/201200#Comment_201200

Just a small note. And I think my first time responding or posting here.

My husband and I live in Missouri as well. He was diagnosed with dangerously low thyroid, moderate cognitive decline, possibly Parkinson's in October 2023. It took me 2 months to get that back to normal. Now we are trying to figure out the rest of it. We also have a 16-year-old grandchild that we've raised from birth, and have taken in a 17-year-old friend who was thrown out of their house due to their gender identity. The kids have been great - loving, helpful, and full of grace for our rapidly changing household.

I am scared about finances. My entire adult life, even though I've had very good jobs, I do not have a pension. I married my husband after he retired so I am not entitled to anything from his pension should he pass. He has one life insurance policy that was for his ex as part of his divorce. So SS is my only income and it ain't much. I have successfully invested over my lifetime, with the idea being that is what I will live on. But, even though he is living at home, we are going through our savings. Sigh.

This disease is horrific. The medical system, which quickly ordered tests and diagnosed him, sent us home with nary a pamphlet on the how-to's of day-to-day life with this disease. The lack of resources, even in my city of 140K people has no day center, and if I have to place him, costs start at $12K a month.

I am by nature an optimistic person, with a flexible mind, and willing to try new things --- but this has beaten me, I'm afraid.

Sorry, I went on too long and too personal. I feel you. And I worry for those of us in Missouri which is quickly losing the scant resources we have.

mrahope

I'm thinking of you and all the others on this thread. It looks like I am going to be walking the same path sooner rather than later. My heart is with all of you.

Daughter of a Marine

Brenda, I could have written most of your post. My DH of 55 years is declining by the day and my kids and I have been researching MC facilities. My heart is not in it but I have accepted that it's not a matter of if but when he will need placement given his severe decline. I have also met with an elder care atty who is helping us qualify for Medicaid which will require that I spend down most of the savings we have worked so hard to build over the years. The vacations we didn't take, the house we didn't buy, all the financial decisions we made so one day we'd be able to travel and enjoy our grandbabies and retirement which is now not to be. My guy always worked 2 jobs as our kids were growing up, never complained. Based on the Medicaid spend down requirement, I will also need to sell our family home and as I envision walking into a new upgraded home, knowing he won't be there to share this new journey with me makes me dread opening that door. There is a reason they call this "The Long Goodbye". i am in mourning, grieving daily, although physically, he is still right here next to me. God help us all who find ourselves on this journey. You and all who gather on this site are in my prayers.

toolbeltexpert

Brenda i am so sorry to hear how things have progressed for you. You may remember I ended up selling our home of 30yrs and bought a home closer to the mcf. First let me say i just had my taxes done and in Tennessee I only have to file federal tax work.

The capital gains tax doesn't cover the first 500k and because I bought a home i didn’t pay anything.

My dw passed in late November which drastically changed my plans. I had planned as best I could to cover 5 or 6 yrs worth of mc.

Just a footnote the mcf where my dw was just went up 2k a month in February,that would have really impacted my plans.

I did all the work, from getting rid of junk to moving to storage then to a new house.

Yes it was overwhelming at times. But I made a plan and stuck to it. Get 1 thing done then move to the next thing. It will keep your mind busy. I am fortunate that i was physically able to do the work.

As far as the loneliness that was the worst! Nothing I can say will help.

So where do i stand now!

So now I was not happy with my new house I am planning to sell it and possibly making a move to new state. I have an apartment rented and have started the plans to have an aution for the stuff! The selling of the stuff was a part of my original plan and if it goes well it will make it easier for me to sell The house. My life is moving at a rapid pace that most would say is to soon, they only need to understand how this caregiver mourned for yrs knowing the outcome and as you see making some clearly hard decisions not only for your dh but about your house and your life. I pray the God will uphold you thru this as well.

You will get thru this too! And you'll do it your way!

Joe C.

Brenda, I can relate to how lonely you feel in the house and how everything reminds you of him. I say that my house is full of ghost of the days gone past. DW has been in MC 28 months now and I have thought about moving since placement but have not pulled the trigger, mainly due do the craziness of the real estate market and not finding the right house for me. I try tacking small steps though, mostly getting rid of stuff that will have to go I’d I find a new place. Just keep putting one foot in front of the other.

midge333

Four years after my wife was diagnosed with dementia, we sold our home and moved into a 2 BR 2 BA single level home. We also had a massive purge of accumulated junk before we moved. I am so glad we did all that before my wife got significantly worse. I can't imagine doing it now.