My heart is breaking..

[Desert grandma]

Dear DU friends, I have not posted much the past month or so because my husband who was doing so well on his skin cancer (squamous cell carcinoma) treated by immunotherapy, is currently at the VA hospital in ICU. The treatment had some uncommon side effects which impacted his kidney function. His creatinine level upon admission was 3.6. Normal is .7-.9. The treatment is steroids, beginning with heavy doses and tapering off. His numbers are improving, as the level today is 2.4. The numbers are headed in the right direction, but they seem to be causing great agitation and even combative behavior. The biggest concern is his agitation as he was trying to pull out IVs. They have those mitts on him that look like boxing gloves. He hates it and keeps trying to get them off. He told me quite clearly today.."Get these off!". He is hard of hearing and the medical providers seem to think his cognitive function has also deteriorated because in the past he was diagnosed with mild cognitive dementia. This morning he did respond to the doctor and told her his name. The medical team is going to assess him on Monday to gauge any improvement. They want to move him into in patient hospice perhaps in the short term to continue the tapering off of the steroid. He is not eating or drinking fluids so they are giving him fluids via IV that contain potassium, magnesium, glucose and other nutrients. He needs to be able to eat and drink fluids. I am praying that he will be able to recover enough that he can come home. He is the love of my life and we celebrated our 51st wedding anniversary last November. He is an amazing man who retired as an engineer from Honeywell years ago and went back to school to get an MS in Social Work and an LCSW certification. He then worked for 8 more years helping homeless vets. He is a wonderful father and I cannot imagine my life without him. Please send caring thoughts and prayers if you are so inclined. Two weeks ago he was in the kitchen talking and laughing with his sister. I am overwhelmed trying to process this sudden crisis.

[Maru Kitteh]

1. Laying here listening to Mr Maru breathe, I can't even imagine your suffering

I am so sorry you and your family are going through this. It’s simply not fair. :

[irisblue]

2. I am so sorry this is happening, you both are in my thoughts

[SheltieLover]

3. Healing vibes on the way to both of you.

So aorry to hear about this.

[JMCKUSICK]

4. I'm praying for both of you Desert Grandma

Thank you for sharing your pain with us, and please know the love in this group is second to none and we're all loving you both right now.

When he is able, please share with him how wonderful these fifty one years have been, including your favorite memories. Let him know he's still needed, but give him permission to rest if that's what he needs.

God Speed Desert Grandma
Love, John

[NNadir]

5. Please accept my deepest sympathy for what you are experiencing.

[alwaysinasnit]

6. Sending you hugs and positive thoughts.

[badhair77]

7. I'm glad you find comfort in reaching out here at DU.

We all need a safe space. I’m a prayer person so I’m sending out prayers for you, your husband and his medical team. I’m sorry you’re going through this and I pray for your strength and your husband’s healing. Hugs and love.

[Raine]

8. Good positive thoughts & prayers coming your way 🙏

and much love.

[niyad]

9. My dear Desert Grandma, holding you and your husband in love

and light. Vibes fo recovery, healing, strength on the way. Your DU family is here for you. Lean as hard as you need.

[kairos12]

10. Sending you both peace and strength.

[Silver Gaia]

11. I am so sorry you are going through this.

My husband has wrestled with cancer in many forms. He is also a veteran and receives VA health care, which has been quite good over the years.

I saw him go through things similar to what you describe when he went through chemo and radiation. I saw very similar things, too, in terms of mental and emotional agitation when his body chemistry had gotten out of whack due to the chemo drugs. And yes, they put him in ICU, too.

I am posting to offer you hope. He recovered. That was over 15 years ago and he is still with me. He is asleep next to me as I type this on my phone. Give it time. The VA doctors will help bring him back to you.

I know how very hard it is, and how scared you must be, but please try to find some time for yourself. Time to relax and be at peace, as hard as that sounds. This can help you cope with the uncertainty. You are the caregiver, as was I, and we need care, too.

We are all here for you. DU is such a caring and supportive community. Lean on us as hard as you need to. We will hold you up.

[calimary]

12. I sympathize. My husband and I have had a long run together.

This Spring it’ll be Year 50. I’m sending you lots of thoughts of strength and courage, every time I think of it. Just your being there will help him greatly. And that in turn will help YOU.

If you can, please update us on how he’s doing AND how YOU are doing. Cuz we care. And we’re gonna worry.

[Donkees]

13. 💛 🧡 ❤️

[Hannahcares]

14. Something to ask the doctors

My dear Desert Grandma,
I know what you are going through and am sending prayers for a complete recovery to you and your husband.
A thought I’d like to share… hubby of 48 years had a bad fall last year. Broke some bones requiring several surgeries and casts. Docs gave him antibiotics and steroids to help with swelling and inflammation. Steroids made him crazy-anxious, aggressive, nothing like the man I’ve known and loved since 1970!
I begged the doctors to put him on something else- different brand of steroids, something to reduce inflammation with out the dreadful side effects. Eventually they were able to taper him off the steroids and lo and behold, my dearest love reappeared!
It’s always worth asking, and even doing a little. Gemini research!
Please keep us posted on his progress. We are here for you, and will lift you both up with our prayers.
Peace, Hannahcares

[malaise]

15. Sending good vibes

[purr-rat beauty]

16. Sending healing vibes and thoughts of hope

From one Veteran who has worked in social work and faced cancer, I know he has the fight in him. Much respect to both of you as you endure.

[democrank]

17. Sending hugs and strength

We’re here for you.

[mgardener]

18. I am so sorry.

You are both going through this

[OldBaldy1701E]

19. I am sending healing vibes your way.

[brer cat]

20. I am so sorry that you and your husband are going through this.

Your husband sounds like an amazing man which makes the cognitive decline so much harder to accept. We can hope that it is a temporary decline caused by his current condition and not permanent.

I will keep you both in my prayers.

[mwmisses4289]

21. (((gentle hug)))🫂

[LuckyCharms]

22. I'm so sorry...please try to stay as positive as you can.

I'm no doctor, but it sounds like this acute phase came on suddenly?

There might be a medicinal cause to this crisis...maybe the immunotherapy and the steroids.

Steroids are a necessary evil. They are a wonder drug, but they can cause a lot of problems too.

Try to stay positive...I've weaned off steroids many times, and personally, they turn me into a different person, both physically and mentally. I'm hoping that things turn around for him once he is weaned off them.

It's a good sign that his creatine levels are improving!

Your hubby sounds like a great guy and a wonderful man...I'm wishing you both the very best.

[lark]

23. Dearest Desert Grandma,

My love and healing thoughts go to you and your husband. Getting old is certainly not for the faint of heart.

[applegrove]

24. Vibes to him and you and your loved ones.

[justaprogressive]

25. Sending prayers for you, he, and

his entire care team, for a positive outcome...

[Arazi]

26. I am so sorry. 😞

[CousinIT]

27. Oh Desert Grandma...

....I am sending well-wishes and healing vibes to your precious hubby. And for you, wishes of strength and peace.

Remember to take deep breaths - and to take care of yourself, so you can better care for him.

[markie]

28. please know

that many positive thoughts are coming to you and your husband

[highplainsdem]

29. I'm so sorry. Praying he improves quickly and will be able to return home soon. Kidney problems

including UTIs can result in what are usually just temporary symptoms of delirium/agitation and worsening dementia, but with treatment for the infection or other kidney problem that almost always reverses and the patient returns to the previous baseline.

[Jilly_in_VA]

30. Hugs to you, and prayers and healing vibes for your husband

This old nurse knows that steroids, whether in long or short term use, can cause some nasty side effects in the elderly, including but not limited to delirium, combativeness, increase in dementia, and similar mental effects. Here's hoping that the decrease and eventual discontinuation of them will have the desired effect and that your husband can come home soon!

[Bettie]

31. I am so sorry this is happening

Being overwhelmed is an absolutely realistic reaction to this.

Hoping he improves.

I hope you have a good support system.

[bluestarone]

32. Sending my healing vibes to YOU and your Husband!!

Hoping he's gets better next week. He sounds like a beautiful person!!

[Cirsium]

33. Brutal

Just brutal. I am so sorry that you are going through this.

[LoisB]

34. Sending prayers for you both.

[a kennedy]

35. OMGOSH Desert Grandma, prayers, positive vibes, positive energy love and hugs.

🙏🏻 ♥️ 🙏🏻 ♥️ 🙏🏻

[waterwatcher123]

36. Wishing you the best at this difficult time (may you have many more precious moments together).

[LatteLady]

37. Don't give up!

Dementia is a slowly progressing disease, if he has changed this much in 2 weeks it is not due to dementia. It could be the meds. It could be his nutrients are out of whack. Both of those things are treatable and will get better if they are treated. Hang on to your hope and advocate for his care.

Generally hospice is for palliative (pain relieving) care for people who are not expevted to recover. Talk to the docs and the SW asap about why they think he has had these rapid cognitive changes and what they plan to do about it. Consider second opinions.

Good vibes to you and your sweetheart -

[Joinfortmill]

38. I prayed for you both.

[JoseBalow]

39. Please don't forget to care for yourself

I wish you all the best.

[TommieMommy]

40. I am so sorry 🙏🙏 I lost my husband who was my best friend 5 years ago. I miss him every day. Sending hugs and prayers

[Wicked Blue]

41. That's awful

Sending you and your husband my very best DU vibes amd blessing

(((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( )))))))))))))))))))))))))))))))))))))))))))))))))))))))))))

[KT2000]

42. Sending healing vibes

to you both.

[mahina]

43. Wishing you both comfort and recovery

He is an amazing person- what a life! Wow. Thank you for telling us about him.


My old friend was in hospice here and he got better and left…it happens! Good luck all around sis. Aloha.

[haele]

44. So sorry to hear this...

You both are in our family's thoughts.

[Festivito]

45. He is lucky to have you, and you, him.

I hope you can keep that in heart while you do what you can do.

[ms.pamela]

46. Steroids

Various treatments require steroid use. I know if you are undergoing chemo treatment and the chemo is heavy duty; steroid use is required to prevent you from dying from the chemo. It is also used with the treatment of orthopedic problems. I cannot use it anymore for my knee as it raises up my blood sugar too much. My neighbor had her blood pressure go through the roof a month after her treatment for her bad knee. She had used it the past without issue except for becoming nervous. She had nose bleeds for 3 days and found out when she went to the emergency room her blood pressure was 200 over 100, she never had an issue with high blood pressure before. She found out that is a rare complication of steroid use. Her blood pressure is fine now. My husband had a double shot of steroids in his back 3 days ago. He never had used steroids before. His blood sugar went up at first but yesterday it dropped to 75. I made him eat candy to bring it up. He was agitated last night too. Some people can have nervous breakdowns with steroid use. Hopefully, after the steroids leave your husband's system he will go back to normal. With cancer treatments you never know what can happen. Both my parents had cancer and the things they went through were difficult for them and us. Hang in there. I will pray for you and your husband.

[MustLoveBeagles]

47. Sending good vibes to you & your husband

Sending you and a ❤️ too.

[popsdenver]

48. Keep up the fight.........NC

[Marie Marie]

49. Just this...

[Grim Chieftain]

50. I am so very sorry, Desert grandma

I'm sure you know all of us at DU are holding you and your dear husband in our thoughts and prayers. When you feel alone, please know you are not. We are with you.:

[cate94]

51. Sending prayers

And

[UpInArms]

52. my virtual arms are around you, Desert grandma

(((((HUGS)))))

and all of my best thoughts go to you and your wonderful husband

[SouthernOregonDem]

53. You are in our thoughts and we're rooting for you and your husband!

[B.See]

54. Wishing you and your husband

much brighter days ahead.

[Doodles]

55. Prayers and positive vibes coming your way.

Your post sounded so familiar. In ‘22 before our 50th, my husband was in horrible shape. Long story and we almost lost him 3 times. Coding etc. Hospitalized for 75 days. The dementia, hard of hearing, etc. etc. all played a part. He is here and good to go now at 79. It was a miracle. Wishing you a miracle too.

[Hope22]

56. I'm sending love to both of you.

Hang on to those moments of joy and laughter. Be easy with yourself. Love and hugs to you. 💗💗🙏🏼💐

[virgdem]

57. Sending healing vibes and hugs to you.

Hoping for better days for you and your hubby. Stay strong.

[Liberty Belle]

58. Kidney infection can cause dementia symptoms - be sure they check for this.

It's reversible with antibiotics.

I am so sorry you are going through this and hope the treatments will work.

[peacebuzzard]

59. I am sorry for this Desert grandma.....

from the bottom of my heart I am so sorry....thinking of you and praying for you and hubby....

[DownriverDem]

60. Life can be so hard

Hoping for the best for your husband.

[hamsterjill]

61. I stopped and said a prayer for your husband and you.

As a Christian, that's my practice. May all of the prayers and good wishes here bring about healing and improvement.

It's no wonder that you are overwhelmed, so please do not worry about that. It means that you love this man and want only the best for him. He is lucky to have such an advocate in his corner. As others have mentioned, please remember to take care of yourself through this.

I wish you all peace, comfort and strength.

[Beacool]

62. I'm so sorry.

Your husband sounds like he's a great man. Keep up the hope, he'll go back home to you. Good vibes are going your way.

[Lemon Lyman]

63. 51 YEARS!

Sending you and your whole family LOVE.

[womanofthehills]

64. So sorry

Yrs ago when my mom was in the hospital, her mind was great when she went in. The next day she had psychosis. I got a list from them of all the meds she was on and an anti anxiety drug they gave her had psychosis as a possible side effect.

Had them take her off that drug and her mind came back. Often they are given too many meds in the hospital. I would get a list of all the drugs they have him on and check side effects.

My boyfriend and another male friend have both been dealing with squamous. My friend has been doing immunotherapy but his last infusion hit him hard. Hope your husband improves fast.

[HeartsCanHope]

65. I am so sorry for what you and your beloved husband are going through.

I am sending you both healing vibes and lots of love. You will both be in my thoughts.

[MLAA]

66. What you are dealing with is so hard, I know from experience with my wonderful husband. My heart goes out to you.

He had short term memory loss and any stay in a hospital for more than 1 night quickly turned into full on hospital induced dementia. Once he was able to leave the hospital he began recovering immediately on the drive home and returned to his normal quickly. I’m sending you both good vibes and best wishes ❤️🩷❤️

[summer_in_TX]

67. Latte Lady offers wise advice.

A number of meds can cause confusion, psychosis, and dementia. It doesn't sound to me like his dementia would have become so much worse so suddenly. More likely it is the medication.

Or possibly a metabolic imbalance. A spry 96 year-old friend had become bedridden and incontinent. She was ready to go and wouldn't let anyone take her to the hospital – until her daughter arrived and insisted. Turns out she was quite low on potassium (I think, this was years ago). Once that was rectified she made an excellent recovery and lived a couple more years.

Hospice care is great for those whose days are numbered. Both my parents were blessed by it.

BUT, it is palliative care, not interventions to help someone recover. This needs to be thoroughly explored and possibly a second opinion obtained.

Not long ago, a friend's father who had a fall, broke a hip, had bedsores and needed skilled nursing was sent to a nursing home in my town. They diagnosed him with dementia, put him on a mind-altering drug, and had a hospice plan for him. Fortunately he developed pneumonia and the daughter had made so much of a fuss that they took him to an area hospital for treatment. After treatment that included the hospital, an LTAC (long-term acute care), and a more specialized nursing home that handled his necrotic bed sores very carefully and professionally, he was able to go home and is doing well now. But the first nursing home clearly intended to treat him as terminally ill and was quite willing to drug him to make him compliant. That is not uncommon by the way, and everyone should be very wary about where a loved one goes for care after a hospitalization.

Praying for you and your husband, desert grandma. 🙏