Just Need Some Prayers update 12/1/2023
UPDATE - MY PET Scan showed the cancer has not spread in my body but still have the MRI to see if it spread to my brain. I'll take the good news. Port goes in Monday. Sadly, Tuesday I will drop my DH off at a Memory Care facility for a 30 day respite care so they can evaluate him and if he does well they will accept him permanently. If not, they will assist in finding a facility with higher level of care. It's breaking my heart. I have told him I'm sick but he doesn't understand. He doesn't understand the word cancer. They will tell him that I have to go into the hospital for 2 weeks for treatment to get well. There are other veterans there so maybe he will relate to them. The facility is near my daughter's house so we can go visit later once he settles in. Wednesday I start chemo. 2x next week, 2x following week, then skip a week, evaluate. I have about 6 months of treatment and/or surgery.
Thanks for everyone's thoughts and prayers.
I posted the need for prayers and wanted to give an update on the results of my biopsies. Not good. To recap: My DH 78 was diagnosed 2 years ago with Alzheimer's-Posterior Cortical Atrophy. He's now Stage 5 going into Stage 6. I had breast cancer in 2017, lumpectomy, radiation. 2-3 months ago I noticed changes in the radiated breast, had MRI, Ultrasound & 2 punch biopsies. Results of biopsies show that I have a rare, aggressive form of breast cancer called Angiosarcoma which ironically is caused by the radiation I had in 2017. I will have to undergo chemo, radiation and IF that works will lastly have a radical mastectomy. Prognosis is not good. I am devastated and terrified. Not only for what I have to face but what will happen to my husband. I am his sole caregiver. I won't be able to undergo my treatment and care for him at the same time. So my daughter (his step-daughter) and I have been looking at Memory Care facilities this week. I am completely overwhelmed. I have to tell him tomorrow because I have testing next week, day surgery to put in a port and chemo will start soon. I don't know how I will tell him and afraid of his reaction and setback. I did send a message to his Geriatric Psychiatrist and asked her for medication for him for depression. He's been saying that he doesn't want to live "this way" anymore and I'm concerned that this news will put him over the edge. His only daughter lives in another state and is on disability so she can't help. Once I find a place for him, I will have to give up my apartment and move in with my daughter to be able to pay for his care. My son will come from another state and help me move. Thanks to each and everyone of your prayers and support. Please keep the prayers coming for PET Scan on Wednesday to see if it's spread anywhere else.
Comments
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Continuing to pray for you and your husband. I’m very sorry for this news. We’re all here for you ❤️
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Praying for you and your DH as you navigate this new path. (((Hugs)))
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Diane i am so, so sorry to hear this. I am amazed that you have put a plan together so quickly.
Perhaps you can soften the blow for your DH. He may not realize the imp!ications like you do. This was certainly the case when i told my partner i had been ill this summer-although she cried for a day when she realized i had been absent, she then forgot all about it and has no clue that it was a life-threatening illness. You may be able just to tell him he needs a place to stay temporarily. My partner has no sense of time whatsoever, and has no clue that she has been in MC for coming up on 20 months.
All this to say, it is going to be harder on you than it is on him. Prayers still coming your way.
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Diane, I am sorry to learn of this latest development. It sounds like too much is happening too soon. I, too, am surprised to hear that you have the wherewithal to make such important plans on such short notice. Have you had any opportunity to research MC facilities up to this point? I am thinking that maybe you could arrange a (minimum) 30 day respite until you are able to sort out the details. Good luck; I will be praying for you both. 🙏🏻🙏🏻
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I am so sorry you are having your own major health scare on top of everything with your DH.
Your good plan will allow some breathing room so you can focus on healing you.
I would think about a fiblet to spare him worry as to why the changes are being made. This is one of those times where you feel especially alone not being able to confide in your spouse, or more so not having a spouse with the capacity to be a support. For me, and where my DH’s dementia is, it would be detrimental to try to explain the realities. Your DH sounds earlier in the journey so you may feel differently. I think your instincts will lead you to a good decision on how to handle it ❤️🙏
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Diane, i am so sorry . Hoping you can get placement for your husband quickly so that you can focus on your yourself. Sending healing messages your way,
Maureen
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I'm so sorry to learn this news, Diane. I continue to pray for you and your DH.
Iris
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i can’t imagine the burden you are feeling. So very sorry for this turn of events. I am glad you have your daughter for support. Hugs for strength as you find a place for your husbands care and for your treatment and recovery.
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🙏Praying for you and your DH.
Praying that the PET scan shows no further spread.
Praying for peace and calmness to help you through this devastating news.
You have planned and organized so much in such a short time. Praying for a good MCF and your health and your family.
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I am so sorry for your update.
I hate to put another thing on your already overflowing plate, but have you met with a CELA to discuss qualifying your DH for Medicaid? There are ways in which you may be able to keep your apartment and some assets while Medicaid covers his costs.
HB
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Diane I am so sorry. Prayers continue that God will give you the strength that you need.
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Praying for you, Diane. So very difficult indeed. 🙏
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I'm so sorry, I can't even imagine how terrifying and stressful this has to be for you.
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Catching up on forum posts today and am so sorry to read about your diagnosis and the situation with your DH. Overwhelming is an understatement. Prayers said. We are all here to virtually support you in any way you need. xo
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Diane,
I am sorry for your recent cancer diagnosis. My DW and I are on similar paths as you and your DH. Both DW and I are currently cancer patients. DW is diagnosed with EOAD and is now stage 6. I am the sole caregiver for my DW with our adult children halfway across the U. S. When I noticed a fast growing lump on my neck and suspected it to be cancerous, a suspicion that was later confirmed, I had to quickly place DW in memory care. While I went through ENT, ultrasound, punch biopsy appointments, etc., I took DW to radiation treatments. My biopsy and 1st PET scan showed that I had stage 4 Diffuse large B-cell lymphoma (DLBCL). I am now halfway through R-CHOP chemotherapy.
I provide that background to let you know that, although no two experiences are the same, I can very much empathize with your situation. Both DW and I have a personal relationship with God through Jesus Christ our Savior. While neither of us would have chosen cancer if we had a choice, we know that we are loved by God and will ultimately be cancer free for eternity. We rely heavily on prayer as we walk this journey and have also found strong support through our church. I will continue to pray for you and your DH as you continue one step at a time down you path. May you find strength, comfort and peace day by day.
Tom
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I have looked at 2 places. Memory Care rooms are so small. Looking at the third that has larger rooms but not sure of availability. I have so many doctor's appointments coming up that I don't have time to look. Overwhelmed.
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Diane,
I understand that your DW is a Vietnam Vet. Have you looked into veterans homes as a possibility?
Tom
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Diane,
I'm sending prayers your way. You've already accomplished so much.
It's ok that the MC rooms are small--in stage 6 less choices will make it easier for him to adjust to the move, and the move should be fairly quick if a lot of things don't need to be transported. I agree with others that this will be hard for him to process, and be upsetting for you both. A fiblet might be helpful.
Thinking of you...
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Diane, I am so sorry to hear about your diagnosis. Prayers for both you and your DH. It sounds like you have already researched and are putting so much in place that will help you get through these treatments with your DH well cared for. Living with your daughter while you’re going through treatments will hopefully make it easier. This is all just too much.
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Oh, my goodness. I'm so sorry to hear of your latest cancer issues. This is must be simply terrifying. You are doing your absolute best in a the most extremely difficult situation. Definitely will be putting in some prayers for you.
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I'm so sorry to hear of your recent health problems. You are in my thoughts and prayers.
Re: Memory Care - it might be worthwhile to rent (or sometimes get for free) furniture from the MC facility. They will even provide a TV. It will save you from having to have a big move while you are seeing so many doctors. You can eventually move in your furniture when times are better.
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Please follow up with the Vets as Tom suggested. My understanding is that they can really help you with your DH's needs. The number to call is: VA National Enrollment Office at 877-222-8387.
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I have no additional advice. I can only add that you have shown such wisdom, grace, and courage in your situation so far. You have been an inspiration to me in different but difficult circumstances and I’m sending you strength and support. I will be thinking of you and please know you’re revered and cared about by many.
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I'm so sorry for your diagnosis. Praying that the cancer has not spread and you will be able to recover quickly.
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I just wanted to share something I was told by a number of people wiser than me when I was looking for MC for dad. I was hell-bent on having a Plan B in case something prevented my mom from continuing care at home before she was comfortable with placement, so I toured a dozen places in the months after his diagnosis. When it became necessary, I brought mom to revisit my top 3.
The rooms are small for a reason. One thing many of the better places said was that their aim was to provide a home-like atmosphere where residents' rooms were meant to be used for sleep and rest. The goal was for the resident to be out of the room and engaged in activities and meals with others as they would be at home, to that end, rooms weren't huge and didn't include meal prep areas. They also discouraged TVs in individual rooms as those who have them tended to isolate which isn't ideal. Most I saw were purpose built with sub-units that held 8-12 residents at capacity that each have a kitchen/dining room and a comfortable family room with a big screen TV. There was generally a communal center with activity space and access to a secure outdoor space as weather permits as well as access to the other family rooms which showed different TV shows.
A few people mentioned veterans' homes. The one near me was a state-funded facility that housed elderly vets and spouses with a range of issues-- not just dementia. They didn't accept Medicaid, but the monthly rates were lower than most places. While they didn't have specific dementia-informed care, and the decor seemed kind of spartan compared to some places, the camaraderie and masculine atmosphere was very appealing. Most MCFs are very feminine spaces. It was my first choice but had a 3-month waiting list.
HB
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Oh, Diane, how overwhelming! We all are praying you can find peace in this difficult journey. I hope you are in an area with first rate cancer care. My husband was diagnosed with angiosarcoma, in 2013. We were referred to MD Anderson, his survival rate was estimated to be 30% for two years......here we are in 2023 and he is still alive, being totally cancer free for 10 years. Please advocate for your own best care. You have so many decisions to make, know that others here are with you in spirit. Come back often to update us.
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No advice from me, except to check into Medicaid eligibility and what the VA can do for your DH. Hugs and prayers sent your way.
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Diane I am sorry to hear about your dx. I will be praying for you.
Your amazing in your planning and it sounds like you have some good help around you. When the going gets tough,the tough get going, is what I thought as I read your post.
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Diane,
Thinking of you and praying for a good outcome. You have always been helpful to all of us.
Please place your DH and give yourself the time you need to fight this latest battle.
Prayers and hugs.
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Diane, I am so very sorry to hear your news. And I, too, am amazed at how quickly you are putting a plan in place for your DH and for your own treatment. Keep fighting the good fight. In more ways than one, you are a warrior.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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