Severe Weight Loss after Covid

riajean

  Hello.  It's been awhile since I've written, though many of your letters have been read.  My husband was placed in MC 13 months ago.  We went through many issues, his peeing all over the facility, in this/that corner; resorting to grown up pull ups.  Then came behaviors; his lashing out; yelling or swinging at staff who were trying to assist him in ADL's as he continued to rapidly decline.  Then, eating issues due to his visual/spatial abilities increasing in much reduced sight, needing a "lift plate" so he could manage his food independently; then to falls, and more falls, and more falls, tripping over people; constantly being sent to the ER; his fighting staff due to not being able to communicate --- then, after all the precautions somehow Covid made it's ugly way into the facility.

He was the last of half the residents to contract it and it knocking him on his backside.  Mildish symptoms, but weakened him severely. The 2nd/3rd day of this the nurse on staff (Sunday) called to say she was worried he'd choke and she didn't have the staff to help her lift him and more - he was very congested, so reluctantly I agreed to have him "sent out" to the ER again, as we were hoping they'd assist but did not.  They did their standard thing and sent him back, strapped to a gurney; labeled bedbound.  Later bruises appeared on his wrists from the mits they put on him and who knows what else happened at the ER?!

Then, another fall, this one near his temple, causing him to bleed and this time I demanded another hospital take him.  This time, a social worker got on board and refused to send him back to MC saying he needed subacute rehab as he no longer walked and perhaps he wouldn't be returning.  I was upset, but happy someone was actually paying attention.  Then more bad news.  Due to his clinical reports behaviors (really once in a while; nothing over the top; those expected with dementia's decline, etc.), no facility within a 75 mile radius offered my husband a room.  Devastated, I called everyone/everywhere, hired a gerontologist, called the VA's social worker and more.

Finally, the "place across the street" from the hospital offered a room; subacute care, skilled nursing after more than a week in the hospital in a thin "johnny"; very sleepy, still combative as they stuck him, and more (who wouldn't be?).  Yesterday, I brought some clothes for him (having cleared out his room at MC - washing everything); to the new facility.  He was sleeping the whole time, grimacing now and again.  He was so thin I asked the nurse what his weight was and she said 152.7.  PANIC !  He's 6'-2"; weighed 195 a year ago; 183 the beginning of September!!!  OMGoodness - he's never weighed so little.  How could he possibly lose so much weight so quickly?  The nurse tried to calm me, saying he needed to be lifted because he cannot stand or walk anymore (sigh) and said not to worry.

How can I NOT worry?!  I had a bad feeling I was watching the beginning of the end and wondered how this subacute care facility could ever get my husband's strength back?! 

Thoughts? Comparisons?  I'm scared...

Oh, and BTW, the MC facility kept over $800 of my money saying the hospital had to tell them my husband wasn't coming back in order to stop the resident agreement because I couldn't give them 30 days.  WT???   His knees and shins were badly scraped, scabs everywhere; his fall was pretty bad for him to look like that.  It was early 4:15 am when he fell.  Should I be angry at the MC facility?  My sons are livid. 

M1

I'm so sorry for your distress riajean.  Sounds like a hospice evaluation might help?  He likely will not regain any functions, from what you are describing.  Probably time to focus on comfort measures.  You can request the hospice evaluation yourself, or ask the facility staff to initiate, probably could go either way.  But there sounds like little doubt that he would qualify.

Jo C.

I am so sorry for what has happened riajean, and can well understand the deep concern and stress you have been experiencing including finding the decline frightening.  It is very difficult to find bed availability if there are behavioral issues; I am relieved on your behalf that you were able to find care accommodation.  From your description, it may be that your husband may possibly have developed pneumonia.

Riajean, I agree with M1 that Hospice would be a good plan for your dear husband. They can indeed follow a patient who is in a facility.  They would be extra eyes, ears and hands on for him and would see to his comfort needs including having him relieved from pain and discomfort stress. They would also be support for you too which is important.

I do realize you know that he will not get better and that his dementia at this point will continue to decline somewhat faster to the end of life.  That is so very difficult for those of us who are caring and striving to do as much as we can for our Loved Ones. From one who has "been there," I think that Hospice would be of good support under the circumstances with the challenges at hand.

As for the last facility not refunding your money; I am sorry. If you read the admission papers, they probably had a clause stating that they needed 30 days notice of the resident leaving or there would be a financial penalty.  This happened to me with my LO.

My LO could not return to the facilty due to an abrupt decline in condition and needed to receive care at a NH level of care following a hospital admission. There was NO time for a 30 day notice and as it was, they would not have taken my LO back due to the high acuity of care required; they could not accommodate it and told me so.

I did NOT cooperate with the facilty keeping the money; they wanted an entire month's rent and would not refund what was already paid for days my LO was not there and the bed had not been "saved, as they could not and would not take my LO back.  I did contact the corporate office as well as the Administrator of the facility.  I explained that they were unable to accommodate my LO's care; that my LO had abruptly and steeply declined and the facility declined to reaccept the patient, and a 30 day notice was NOT able to be given under such extreme circumstances and wanted the money paid and not used to be refunded.

I also explained that if this did not happen, I had no recourse but to get the Ombudsman's office involved as well as the State Insurance Commissioner as the withholding of the refund was inappropriate under the circumstances.  They buckled and refunded the money. I suppose I was at that point emotionally involved and I was not about to let go.  I would have got an attorney involved which would have cost more than the refund, but I was not going to let myself be badgered or taken advantage of.  When I could not control anything else, this item had become for me, an emotional, "enough is enough."   Just one person's experience.

I understand you have family involvement with your sons.  It is important for them to understand, (if they do not,) that Hospice does NOT speed up death.  Their primary purpose is to keep the patient as comfortable as possible under the circumstances.  This means assessing meds and comfort each time the Hospice RN visits.  The Hospice RN can also write orders in the chart for the NH staff to follow and the Hospice RN is in communication with the Hospice physician for orders as needed. The decision for Hospice is yours.

Best wishes and warm thoughts are being sent your way; let us know how you are doing an how things are going; we will be thinking of you.

J.

dayn2nite2

Agree with hospice.  It is time.  Unfortunately, the weight loss, inability to walk, those are hallmarks of the final stage of the disease.

Be mad at the memory care?  Other than keeping him after he should have been sent elsewhere (probably out of sympathy for you), I don't know what there is to be mad at.  Check the contract you signed when he was admitted as to what the requirements were to get money back.

Covid is now a part of life, everyone will get it eventually, so can't be mad at that.

Being mad at dementia is okay - we're all mad at it.

The one question I had for any facility was - will you keep my LO until they die?  If the answer was anything other than yes, I moved on to another facility.

Jo C.

Dear Day; I clearly and succinctly asked just that question and they said, "Yes;" but despite my LO not being a behavoral problem whatsoever, they did  NOT do so. Once she was more than a one person transfer from bed to a wheelchair, and could not make it to the dining room independently, despite the DON and the Administrator at the time of admission stating they could keep a patient to the end of life and also used Hospice, they did not do so.  We were not the only ones to have that happen.  Really stunning and leaves one running about under duress and stress trying to quickly find another place.

Hospice, absolutely the best step at this end stage that riajean is facing with her husband; it has been such a difficult time for her and the family.

J.

Joydean

Riajean, my thoughts and prayers are with you and your family!

Ed1937

Riajean, I have nothing to add, but just wanted to let you know we're all here for you whenever you need us.

riajean

Thank you everyone.  Not mad at MC but like you said, my DH was probably there longer than he should have been.

New - nurse said he was running a temp and has chest congestion - thinks it's Covid pneumonia.  Just keeps getting worse.  He's getting fluids, tests come back tomorrow.  It was impossible to keep him awake yesterday and I guess today too - obviously something wrong.  I had a bad feeling yesterday.   Now I'm just scared.  I'm going to lose him.  He has a DNR; so now what?  What if he can't breathe?  Do I make that life/death decision?  Oh my Lord, I don't think I can.  Not doing well here..............

dayn2nite2

Did you speak to the staff about hospice?

If he is DNR, what decision would you have to make?  What do you feel his quality of life is?  If he wouldn’t want this, getting hospice and keeping him comfortable is probably the plan, rather than hospitalization or aggressively treating his illness so he can live longer as a bedbound person in last stage dementia.

Gig Harbor

Riajean I am so sorry your husband is not doing well. It sounds like he may be close to the end of his journey. You have been his champion thruout this time and I am sure he would be grateful if he could speak. He is so lucky to have you there supporting him. He may recover from the pneumonia but no matter what happens it sounds like he won’t be suffering. I hope you can find strength and peace during the days ahead.

riajean

Update:  DH has pneumonia in his right lung.  Getting antibiotics; IV treatment for dehydration almost complete; doing better today.  Eating  more.  Nurse said he seemed uncomfortable when they tried to turn him, so an Xray shows a crack in his upper left hip.  Says there's nothing they can do other than to be careful of that area and maybe have him see an Orthopedic Dr in a few weeks - depending how he's doing.  I asked if she thought he'd recover from the pneumonia and she felt he would.  The Dr. on call will be there tomorrow and I will speak further with him about my DH's progress and what he thinks about Hospice coming in.  The nurse seemed upset at the crack in his hip - given all his falls lately which makes me feel worse toward MC and what they may have ignored, or maybe it was the ER?  Who knows and does it matter?

I had asked for a Hospice evaluation the end of June, but the head nurse at MC didn't follow up on this (perhaps thinking it was unnecessary or too soon) until he fell hard and cracked his head open.  Dementia can fool even professionals, having them believe he's better than he really is.

I KNOW he won't survive forever, but at 69, he's trying hard I think.  The loss of weight scares me as it weakens him.  The nurse also said his not being able to feed himself doesn't go a long way in his becoming better.  So who knows at this point?  I've been planning the funeral Mass and music for a year now.  Just know that when that day comes, I won't be able to do it.  I've been a mental and physical wreck even though I know FULL well where this goes.  Just hard, faith or not; trust or not; it's still hard to realize.

Thanks again for everyone's thoughts.

Joydean

Riajean, no one can tell you what to do, but I agree with all the others that have suggested calling in hospice. If nothing else they can keep your husband comfortable and paid under control. Praying for you and your husband!