How my husband escaped

Soul Mate

Thank you all so much. I’ve learned a lot from this forum.  And it helped to have the shared experience. Now it’s my turn to share.

In 2015 my husband started having trouble with his executive function   His father had dementia and so I knew it was the beginning of the end.  A few years later we moved to a senior community that had the whole continuum of care from independent living to memory care and skilled nursing, which was important because he’s had type 1 diabetes for over 50 years.

 

Recently he was approaching stage 6 and was able to do less and less for himself and his care was getting too much for me alone to handle.  I don’t know why I thought putting him in memory care was the answer.  He was having trouble finding his way around our apartment, what made me think he could find his way around a whole floor of an unfamiliar memory care unit?  If I couldn’t handle one person by myself, how could one attendant care for a half dozen or more at a time? Especially if any or all of them were having trouble with their dexterity like he was? I had long thought that incontinence would be the breaking point, but he was still capable of signaling he needed to go – I just had to lead him through the steps.  Why did I think one attendant could handle the toileting needs of a group?  And why did I think that they would know how to manage a diabetic, let alone have the time, knowledge or inclination to do so?  And why did I think a revolving team of new attendants every eight hours or so would be good for his sanity?

 

So I told the “fib” -  he was going to a “hospital” for a doctor to help him cure his lifelong allergies that recently reared up so he’ll be able to breathe through his nose better.   They gave him a physical first thing so he bought the fib.  Being in the next building over, I was able to drop in, like you would in a hospital.  Sugary snacks were available all of the time and not monitored.  His blood sugars ran way, way higher than normal around the clock.   Then they lost his blood sugar monitor for a day or so.  Each time he saw me he told me he was going to find a way out for “us”, not realizing I was coming and going.

 

In the late hours of day four he was wandering around (probably lost) and got into an incident with another patient.  I don’t know any more details than that.  I don’t know if his blood sugar was low, I don’t know if he was scared or confused, I don’t know if the other patient did something to set him off.  I just don’t know.  He was sent by ambulance to the hospital emergency ward to be drugged and contained.  They called but my phone ringer was off so I didn’t know until morning so he spent hours in a strange place.   

 

My son helped me get him back to my apartment, clothed only in a pajama top and paper trousers.  The trauma caused a noticeable drop in his cognition.  We decided to take him out of memory care. Within a day or so, I noticed blood in his urine.  Did he get hurt when they subdued him?  Or was he suffering physically which caused him to lash out?

 

In order to do a ct scan of the kidneys they had to sedate him.  This caused a further drop in cognition.  Then he was admitted to the hospital for observation and put on palliative care.  Another drop in cognition. Within a few days he was in hospice care and then transferred back to the skilled nursing part of our senior facility. By this time he was agitated and so they had to drug him to get him to stay in the bed.  Further drop in cognition. 

 

He died a couple of weeks after admittance to memory care.  He indeed had found a way out.  

 

It’s hard to decide if it was better to have a fast, traumatic death or to slowly die for the next two to four years in memory care.  May he rest in peace.

Last Dance

 Soul Mate,  The sad part of this all full disease is that death is the only cure for it or as your DH said he was going to find a way out.  Words cannot really say how bad I feel for you, and the situation that you were in. I think one of the worst decisions any of us has to make is what to do with are loved ones, do we put them in memory care, a nursing home, or in home care? For some of us there seems to be no all right or wrong answers. My wife died six weeks after I put her in memory care I often wonder if I would have kept her at home would she have lived longer, but unlike your husband or others on this board she never had any traumatic experience she just gave up and went to sleep.  We all tend to ask ourselves questions that will never have answers for any of us. We do the best that we can to take care of those that we love.  I always say I'd rather die young and healthy then old and crapping in my pants and having to have someone change them for me.  I am really truly sorry for your loss but whatever you do, do not blame yourself, you did what was best for him. God’s Blessings to you ,and please take care of yourself. Richard

60 falcon

I'm sorry, soul mate.  Thank you for sharing your story.

Davegrant

Sorry for your loss. Thanks for sharing your story.

Ed1937

We make decisions based on what we think is best at the time. We can all look back to wonder if what we did was right. I've done that too after my wife passed. But we should not dwell on the negative, because it will not serve us well. I think I did a relatively good job as a caregiver, and that's the way I choose to remember it. I'm sorry for your loss.

Nowhere

The shrinking middle class cannot afford private Alzheimer’s care. The majority are advised to let the professionals in a facility help us when we can no longer manage. In reality for most that means minimally paid, understaffed, inadequately trained and educated folks often working double shifts with too many needs to fill. Our loved ones are locked in and safe from wandering and getting hit by a car, but not safe from neglect, falls, or abuse. Loved ones who place their person must be frequently present, tactful in using constructive criticism and diligent advocates for all the residents, but especially their loved one. You’re right on below; yet you did what was necessary. 

 If I couldn’t handle one person by myself, how could one attendant care for a half dozen or more at a time? Especially if any or all of them were having trouble with their dexterity like he was? I had long thought that incontinence would be the breaking point, but he was still capable of signaling he needed to go – I just had to lead him through the steps.  Why did I think one attendant could handle the toileting needs of a group?  And why did I think that they would know how to manage a diabetic, let alone have the time, knowledge or inclination to do so?  And why did I think a revolving team of new attendants every eight hours or so would be good for his sanity?

Your husband is at peace. You sound like an amazing wife bringing him home when the facility failed him. You did not, it was the abysmal medical system that we and our afflicted loved ones must navigate. There are studies indicating care giving loved ones die first of medical neglect and stress.  Trust yourself when you wrote this: “Recently he was approaching stage 6 and was able to do less and less for himself and his care was getting too much for me alone to handle.”

Your husband could not overcome his diagnosis. You are survivor. I imagine he’s very proud of you and he is no longer suffering. Deep breath. Peace to you on earth. 

M1

So sorry for your loss SM.  Please don't beat yourself up, you made the best decisions you could with the information you had at the time.   That's what most of us do.  It's so hard not to second-guess ourselves in these situations.  We all wish there were some other answer to the "what ifs".   But this is a terminal illness; he may have had the same rapid downhill course if you hadn't sent him to MC; there's no way to know that.  

Adding my wishes for peace, too, and comfort in your time of need.

ghphotog

So sorry. It must be horrible thinking about what he must've felt but there is no way you could've predicted that experience in MC. He's free now and in his right mind somewhere and if he could I'm sure he would be very proud of you.

toolbeltexpert

Soul mate I am so sorry for your loss. praying for you peace.

Dio

Soul Mate, so sorry for your loss, and so quick, to boot. Don't feel guilty. I actually believe it to be a blessing to die quick and peaceful. Dragging out this disease and prolonging life--what life?--is more torturous. May you find comfort in the days ahead knowing that the suffering is over.

Marie58

I'm so sorry for your loss. May God bless you with strength and peace in the days to come.

Joydean

Soulmate, sending my condolences to you and your family. You did the best you could so don’t keep beating yourself up. He is free and no longer in any pain. He would not want you to blame yourself, he knew you loved him. Prayers for peace and comfort for you!

Jeff86

Your narrative brought tears to my eyes, Soul Mate.   I am so sorry for your loss, and for now things all went down.

I’m in full agreement with other responses here—you did what you thought best for your DH under very trying circumstances.   That can never be wrong.  Please be kind and gentle to yourself as you face the difficult weeks and months ahead.   You have my deepest condolences.