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I think we are nearing the end.
Posted: Friday, September 6, 2019 10:57 PM
Joined: 4/20/2016
Posts: 49

I joined this wonderful group almost four years ago, after the unexpected and heartwrenching late stage dementia diagnosis of my MIL. Her case was so shocking, because of her sudden downturn that made her condition finally clear to us: her severe sundowning, visual and auditory hallucinations, lack of remembering daily care routines, extreme agitation and paranoia, along with psychotic delusions that placed her in basically a geriatric psych hold and then a devastating diagnosis of mixed dementia. Most likely Alzheimer's, but possibly Lewy Body along with Vascular dementia. She was put on Risperdal as a last resort for her very survival, when her paranoia was causing her to believe her food was being poisoned, as were her clothing labels. She had become a stranger seemingly overnight, and a completely helpless soul who could no longer live independently as she had for over 40 years. Her diagnosing doctor placed her in a secure memory care facility, where she has resided for the past four years. She is now 89, and we have watched the person we adored, plateau for long months and somewhat stabilize, and considered high functioning when she regained her ability to communicate once her hallucinations, paranoia and delusions were under control through the, in my opinion, miraculous Risperdal. It gave her quality of life. Although she lost her incredible gift in artistry, she was able to enjoy looking at artwork still. She never understood why she was where she was, but never really asked, and had no memory at all of how she ended up in what she thought was her "office." Sadly, the past few months have seen a shocking decline; she had lost her mobility within the first two years at the MC, and finally had to be in a wheelchair full time. She eventually had to be put in a tilt chair for easier care, she started leaning extremely to the right, lost her ability to communicate in sentences, and now has lost the ability to eat solid food. She has suffered terrible falls that put her in the ER twice, not for lack of amazing care. She was placed in Hospice this past July, and is in steady decline. I am in deep grief again, feeling like I am losing yet another person I learned to love (since we really did lose the MIL I knew for over 30 years, four years ago, being replaced by a "stranger" in her depths of late stage dementia that I knew nothing about before this unimaginable journey). Our grieving over having to sell her prized condo to pay for her care, to put her precious paintings safely in sealed containers in our basement (along with sharing some with our daughter and son in law; I have yet to be able to put up very many on our own walls. It feels like I'm stealing...I know, not logical. We will never sell her beloved art. Plus, it makes the grief worse, because she so loved painting and drawing, and lost that gift very quickly). I know I'm rambling. My apologies. We have visited her once or twice every weekend since Hospice started (we live only a few miles away, and have made it a point to visit her weekly since she was admitted to her MC). Some days we can't rouse her from deep, catatonic sleep which is frightening; it's SO hard to see the physical changes in her appearance, and I think I am at the point where I will take up the counseling offered through the Hospice service. My husband holds all emotions deep inside; he could benefit from the counseling as well, which I hope he considers. Just a jumble of thoughts and emotions, some fear, also hope that her suffering will end soon. I'm just finding it so hard to imagine my world without this beloved soul in our lives; but also confused at the goodbyes for someone I really only knew for four years, with only brief familiar traits coming through of the person we lost four years ago. She is able to sip homemade shakes our wonderful MC kitchen prepares for her, but even that is waning now, with the added difficulty of swallowing. This group has been a godsend during this horrible journey. Thank you. Please keep my dear MIL Tara in your thoughts and prayers, or positive energy, and strength for our family during this difficult time. Thanks for "listening." I hope to continue being a source of help for others who are going through this cruel illness with loved ones. But for now, our family is in an odd Twilight Zone holding pattern. I do want her suffering to end, but don't want to say goodbye. Again.
Posted: Saturday, September 7, 2019 5:24 AM
Joined: 8/15/2017
Posts: 101

Prayers for you and your family for peace and comfort. We are also in this Twilight Zone of waiting for the inevitable. Peace to you.
Posted: Saturday, September 7, 2019 8:20 AM
Joined: 9/3/2016
Posts: 215

Blessings to you and your family. We are also in that twilight zone of waiting. You're right that it is heartbreaking and confusing. Reading your experience with your MIL sounds very similar to what I have experienced with my mother too. Like you I am in that role of waiting for the inevitable, and the conflict of on one hand hoping it comes soon to end this for my mom and yet to think of a world without my mom is almost incomprehensible. And yet, in truth I've been living in a world without my mom for at least the last four years, as the person the disease made of her is nothing at all the way my mom really was. As you said, she doesn't even look like herself anymore. It's all so hard to reconcile. This is a horribly cruel disease. Cruel to the person suffering, and devastating to those who love that person and are suffering right along beside them.
Jo C.
Posted: Saturday, September 7, 2019 9:06 AM
Joined: 12/9/2011
Posts: 10754

Dear agreen24, I understand and am so very sorry.  How blessed your Tara is to have such love surrounding her.

Warmest of caring thoughts are being sent your way; and may peace soon find Tara and her beloved family.


Posted: Saturday, September 7, 2019 9:57 AM
Joined: 4/1/2014
Posts: 5054

Prayers and thoughts of strength from me to you and yours agreen24. I'm sadden to think your family may soon lose a beloved member, but the end of life for someone with severe dementia is a kindness that God extends to His children so that they may be whole again.

 I often ask God to take my mother peaceful in the middle of the night and I make sure I tell my mother how much she is loved and what a good mother and person she is and if she is tired, she can go to "sleep". Many kisses follow- as I never want to say that I should have kissed her more on her last day.

I think our loved ones feel the love and I'm sure your MIL appreciates your care and love-if not now-soon. Blessings on Tara's sweet soul and best wishes to you and your family.

Posted: Saturday, September 7, 2019 12:26 PM
Joined: 4/20/2016
Posts: 49

Thank you all for your loving, supportive thoughts and words. My heart goes out to all of you walking this same difficult path with your loved ones, and prayers for comfort and peace. I'm so grateful for your empathy during this heartbreaking time. We will be visiting Tara this afternoon. I know she would be amazed at the positive energy you are sending her, and our family. Sending the same to you and yours.