Late Stage Sudden Decline

PastorB

My DW was diagnosed about 8 years ago at age 62, early onset. The decline from moderate AD was slow, but perceptible along the way (slow to me means I often had a little time to adjust from one episode of decline to the next). She has been in MC for 2.5 years now. The early transitions were some of the hardest. The two hardest were when she could no longer drive (that took almost two years to get through after I engineered the stop) and the transition from home to MC. The challenge of that one went on for almost two years as well.

Over the past year we have gone from refusal to change clothes (the staff were "stealing" her clothes when I took them home to wash), to wearing multiple sets of clothing at the same time (think Randy in "Christmas Story" and you get the idea). Now all of a sudden, in less than a month, DW can no longer string together a coherent sentence. We went from her wanting me to get her a dog to a conversation today where I had absolutely no idea what she was talking about. Many of her words were invented. I know this happens toward the end of the journey and it came crashing home that our time together is drawing to a close. She will be 70 in February and we will have been married 40 years in April if she lives that long.

Friends often ask me how she is doing. In her circumstances she has actually been happy lately. Instead of fighting not driving and demanding to come home, she has socialized and participated in activities. I am glad she has had this time. My most fervent wish is that no one ever again has to understand what it is like walking with a dearly-loved spouse through this nightmare. I don't want anyone to have to understand first hand ever again. I would love to come on this site once again after an effective treatment or cure has been identified. I want to celebrate with you all instead of crying with you. I really and truly do understand.

Today I realized that the "long goodbye" is nearing finality. I love her and miss her, but Lord knows how much I want her to be free!

Jeanne C.

You and your darling wife are in my thoughts. I want to celebrate with you, too.

LJCHR

PastorB - my heart goes out to you and your DW - and what your adventure has been and will be.

We are not there yet, probably stage 4. Will keep you and DW in thoughts and prayers.

Jgirl57

Sweet but heart breaking post . Thank you for sharing your thoughts . Hugs to you as the journey winds down .

ButterflyWings

UTI? Due to the suddenness you describe.

My DH has lost lost of his language in the last year, 5 years since diagnosis. It is a gut punch each time I hear him string the rare few words together, because they are nonsensical -- often just a thread that trails off unfinished -- yet I can count that as a win these days. At least it is an increasingly rare opportunity to hear his voice. Nearing the end of the line here too, but some of the staging models say it may be another 8-10 years still.

Nightmare disease is the truth. Thank you for your candid sharing and eloquent statements. My heart is breaking for you and your DW, as it bleeds minute by minute for me and my DH and so many others, as you said. Wishing you any moments of peace and/or joy you may be able to preserve in the days ahead. Those fleeting seconds are priceless.

PastorB

Thanks everyone. DW is one of the most caring and intelligent people I have ever met. She was an emergency room nurse when we married. Each time I am with her I remember the tremendous compassion she had for people in what is now her own situation. I am glad that if nothing else I can shower some of that compassion back on her. (No UTI that I know of. Her decline has always been in fits and starts - stable for a while and then a big sudden dip.)

I know some of you (as did I) worry about how much antipsychotic or anti-hallucinogenic medication is too much. I would not allow DW to be overmedicated but I also learned not to be afraid of the amount of medication she needs. We were blessed to have an excellent geriatric psychiatrist who took all the time needed to start with one medication at a low dose and check in regularly to see how she was doing. The antipsychotic came later. Same was true after placement when her care transitioned over to the MC medical staff---excellent care and cautious adjustments. She takes enough Seroquel and Lexapro to keep the symptoms at bay, but does not sleep all the time. Even with the meds, a certain amount of paranoia and occasional hallucinations broke through, but the severity was greatly reduced. (If anyone with an LO in later stages knows if a time comes to scale back those meds, please let me know. I don't see any remnants of the kinds of hallucinations or paranoias she had but I don't want to see them start up again either.)

To those of you whose LO's are in earlier stages, know that all you can do is the best you can. You didn't give them AD or some other dementia and I have no doubt you would take it away in an instant if you could. You are human and you are going to make mistakes. You'll learn from them and new challenges will come your way. Please find ways to take care of yourselves and be good to yourselves. Even after my dear Karen is gone, I will be praying for you. Thanks for "listening!"

mrahope

Hello PastorB. Thank you for sharing this with us, especially your experiences with medication and the hurdles of no longer driving. I can tell you, too, are a compassionate person. May you and your DW find the peace you deserve.

Dio

PastorB, your post is heartwrenching. My DH's current worst symptom is also an inexplicable fear of MCF staff "stealing" his clothes whenever they want to change him. He fights them, takes swipes and punches at them, had caused harm to staff a couple times, and involved a 911 call to police. I don't understand why, but the way our journey has transpired, I can only describe it as DH's brain having exploded before my eyes. We are still trying to find the right dosages and/or calming meds without over sedating. With his aggression, however, I've given up on caring about over sedation. Being more sedated may be safer for everyone, at least for a brief while. I have no idea what stage he's in and have given up on figuring it out. All I know is that as long as I'm alive I'll be there through the final stages by his side and will make sure he gets the care he needs to finish this journey. One day at a time. Take heart in knowing that you are doing your best! But part of that is also taking good care of yourself.

gampiano

Dio,

I agree with you about the sedation. It became physically impossible for me to handle my husband's aggression, and I begged for more meds. Its amazing how strong patients can be when they're agitated.

Super human.

So sorry for all of this,

Maureen

PastorB

Hi Dio and Maureen - sorry, I haven't had a chance to log in lately. My vote is with you both: don't worry about oversedation at this point in the process. DW is not lost in sleep with her current doses. She is still fighting with the staff about changing clothes and personal hygiene. Of course overmedication is a real and legitimate concern in the earlier stages.

As for the stages themselves, I've not spent a lot of time trying to figure out exactly where she is. They overlap and sometimes it seems she reverts back to an earlier stage for a while, just like sometimes she is more lucid than at others. The AD research center here in my city evaluated her in September and indicate that she is severe and nearing the end.

Thanks for your lovely comments, all. It is a help to know that you understand and a hurt to know you are in a position to do so.