Six month update on MCF placement

Vitruvius

Sorry for the long post, but DW has now been in her MCF for six months so I thought I would provide an update. A reminder, I'm the guy who developed a deadly skin disease just as I placed DW in her MCF. I'm stabilized and should have it all under control soon. 

But our path through dementia seems different and much faster than others I read about here, maybe our story will provide some insight for others. My DW has the Semantic Variant of Primary Progressive Aphasia, aka Semantic Dementia (SD). She is now only 71. As the name suggests it profoundly affects her communication abilities. It has not exactly followed the stages given for Alzheimer's, but it's close, particularly in the later stages. 

Early 2019, just four years ago DW seemed pretty normal. She was beginning to act a little quirky, and I chalked it up to her recent retirement. Neither of us had anyone with dementia in the family so I honestly didn't see her behavior as troubling. She was very fit and athletic and we walked or hiked daily. 

Early 2020, by this time DW was only starting to have trouble with words, as memory and orientation issues are not an early symptom of SD. We looked for curable causes such as her hypothyroidism and this and the pandemic delayed her eventual diagnosis. On the AD scale she probably started the year at Stage 4.  The diagnosis came in the fall and included a CT, MRI, and PET scan. She was referred to a major national university's center for dementia which had specialists in rarer dementias. DW could still take care of all of her ADLs, and many of the IADLs. 

Early 2021, DW moved onto Stage 5. This was a tough year as she became increasingly frustrated by what the disease was doing to her, without really being aware of the reason. She became angry and difficult a times as the neurologist adjusted her meds, but sweet and easy to take care of most of the time. She began a day care program in the late summer which was a great benefit to both of us.

Early 2022, DW was beginning Stage 6 and she went quickly from 6a to 6e in about six months. By late summer I was stressed out and getting sick. I placed her in her MCF in September. I did not tell her about the placement in advance and remarkably she never questioned it, she acted like being there was perfectly normal from the very first day.

Early 2023, I am afraid she is moving into Stage 7. DW can no longer walk without a least one, and sometimes two people helping her. The aides at the MCF try to walk her as much as possible, but a journey of only a few dozen feet is very challenging for her. She must be hand fed now, although she still has a good appetite. She sometimes can't hold her head up and has her chin on her chest. This makes feeding her difficult. She cannot sit on a chair or sofa without a pillow to prop her up or she will slump sideways. She speaks very little now and does so softly and rarely makes any sense. Remarkably if I tell her "I love you" she will immediately reply "I love you too" clearly and distinctly. But if I say "I love you very much" she either does not reply at all or say "OK", her go-to response for most things. She seems to have little awareness of the goings on around her.

I visit every other day, but it is very disheartening to see her almost daily decline. 

DW may go on like this for who knows how long, but I wouldn't be surprised if she did not last the year. This will sound terribly callous, but I hope for her sake it ends sooner rather than later.

Not expecting any responses, just letting folks know about just another different path of dementia.

Dio

Thank you for sharing your story! As sad as the situation is with your DW, a quick and peaceful transition for her to end the misery may be a blessing. (I wish I had my own crystal ball for my DH and hope his God is merciful to him.) Also wishing you a speedy recovery!

M1

Glad to hear from you Vetruvius.  Doesn't sound callous at all, I have similar thoughts on a dialy basis--and my partner's progression is much slower than what what you've witnessed.  Death will be a release.  I'm glad you can visit so frequently.  Maybe it helps her.  Am glad to know your skin disease is better, too.

Ed1937

Vitruvius, I'm glad to hear that you're on the mend. Thank you for telling your story.

FWIW, my wife passed on last June. But it was not from dementia. When she was taken, I was so glad she didn't have to see stage 7, which is probably where she might be now. There is no shame in wanting this to be over with for our LOs. They've suffered enough.

Joydean

Vitruvius glad to hear your skin condition is improving. I remember when you first mentioned it and how miserable you were. I agree with the others that say it’s not callous that way. I can say I think the same way, I pray my husband does not get to stage 7. He’s mid 6 now and can’t do anything for his self. I can’t understand half of what he’s trying to say. Sending prayers for you and your wife. Take care of yourself.

Jgirl57

No need to apologize for a long post. Every word you wrote

could possibly help someone else and can help your see what you have been through. Sending virtual hugs to you as this journey marches on.

Buggsroo

Hi Vitruvius, 

Thanks for the update and explanation about your wife’s dementia. I can relate to the speed that the progression is leading to. My husband’s geripsych was pretty shocked by the rapid progression of my husband’s dementia, when he saw him three weeks ago. 

It is sad to see how it goes, this disease is merciless and takes no prisoners. I live day by day and take it as it comes. The doctor also thinks my husband has frontal temporal lobe dementia as well as Alzheimer’s. I am still trying to get my husband placed, it is an ongoing process. 

I also understand the wish to see this coming to an end. I am thankful that my husband does not seem aware that he is compromised by this disease. I don’t think it is callous to wish that the person you love freed from this disease.

DJnAZ

Hi, Vitruvius, and thanks for your update about your wife. Your unfortunate journey with dementia has so many similarities to mine that I understand all too well what you and your wife are going through.

My wife, only 65, has global aphasia. It has been three years this month since I really became aware that something was happening to her. She was writing content for online publishers and began getting numerous re-writes and article rejections. Over the following 18 months her dementia progressed to a point that her writing stopped.

She was diagnosed at Barrow Neurological in Phoenix a year ago with moderate dementia and receptive/projective aphasia. Last May she was placed in long term memory care. She is physically healthy and able to take care of her ADLs.

 Communicating is her problem. She usually does not respond when spoken to, but uses short 3-word sentences over and over. For example she will say, "...I can terrible", or "...lets go terrible". She ends almost every short sentence with the word terrible.

I'm not clear on what dementia stage she is currently but hope to find out more in April when we have a follow up with her neurologist. I am so sorry any of us are going through this and want to emphasize that you are not being callous hoping that the end comes sooner than later.

Glad to hear your health issues are much better. And thanks again for your post. It really helps to know that I'm not alone.

Paris20

Vitruvius, your post really resonated with me. I just posted how hard it has become to visit my husband, who was diagnosed with AD in 2015 and then had a massive stroke several months ago. I think you’ve provided insight into my current case of guilt. My husband is in such bad shape that I know in my heart of hearts I’ve changed what I wish for. His decline is so hard to witness that yesterday I just left the nursing care facility after half an hour. When my father was dying of cancer and in terrible pain I found it easier to wish his suffering to end. This anticipatory grief is worse.