Planning for Future Young moderate Early Onset Alzheimer

Bestillmylove

My DH was diagnosed with young moderate early onset Alzheimer's at the age of 57. He lost his job one year ago. He was also diagnosed with LADA Type 1 Diabetes at age 55. Needless to say, it has been devasting. We have been fortunate to finally secure Social Security Disability. We are now planning for the future. I am looking for help for his living will. He has decided because of his diabetes he does not want to receive insulin when he reaches the stage where he does not know anyone & can't care for himself or where it is impossible for me to care for him at home. He does not want to go into a memory care facility. I do not want this on my shoulders, and I want him to be very specific in his living will while he can still make decisions. Is there anyone out there where their spouse has had specific request or maybe even a diabetic stating the same thing. He is basically telling me his "out" is no insulin which he would pass within days to a week.

Any guidance that I can share with him?

midge333

My DW (age 69) has vascular dementia (diagnosed at age 60) secondary to 61 years of Type 1 diabetes. She had the following written into her healthcare power of attorney:

"If I am diagnosed with a terminal condition, in a persistent vegetative state, or in the advanced stages of Alzheimer's disease or other form of dementia, at the point where there is no meaningful chance of recovery from such a state, then the artificial supports, such as cardiopulmonary, ventilator and nutritional supports, would become an extraordinary burden and should be removed. Any medication that I am currently taking, including but not limited to insulin, should also be discontinued. However, I would want fluids and nutrients offered by mouth as a comfort measure. I would want adequate pain medications, and other nursing and comfort measures offered but not forced throughout the dying process."

I would recommend that you get this all documented while he is still functional enough to sign off on it. I will say that one shortcoming of our document is the lack of clear documentation of the severity of dementia required to stop insulin. Our palliative care doctor wanted to add it to my wife's HCPOA but she is incapacitated and can no longer sign documents. There is a catch 22 to all this. My DW's 60 year old self would have wanted the insulin stopped about a year ago. Her 69 year old self has anosognosia and does not want to end her life. It is complicated.

charley0419

the whole dame illness is complicated

sandwichone123

I love the resources from fivewishes.org. They offer a form that really walks you through the decisions and options, while leaving space for additional instructions or comments.

SDianeL

So sorry for your husband’s diagnosis. After you complete the document it may be helpful to others to post it here. As my husbands DPOA and Health Care Surrogate I was able to make end of life decisions for him. He passed in August. I know you would rather have his wishes in writing but many times health care providers are reluctant and afraid to honor documents for fear of being sued. Also with Alzheimer’s he may be able to communicate but not understand what he was agreeing to due to his inability to reason. So if that happens, be prepared to make the decision on his behalf. When my Mom had a stroke although she had the necessary documents, the hospital didn’t honor them and our family had to sign papers for them not to insert a feeding tube. And recently when my step-Dad had a stroke, the hospital said that Florida has their own DNR document they made him sign although he had one his attorney gave him. Sending love and hugs to you both. 💜

Bestillmylove

https://alzconnected.org/discussion/comment/235852#Comment_235852

https://alzconnected.org/discussion/comment/235852#Comment_235852

This is so helpful. It is so complicated. We all know the diagnose of Alzheimer is NOT reversing. All his test, Pet Scan, Pet San Amyloid and spinal tap all came back Alzheimer. The doctors are predicting because how far he has already progressed since diagnosed a year ago to continue progressing quick. Although no one truly knows. He is still able to make decisions and that is why I am trying to do my very best to have as much in order. We are in the process of making decisions to downsize and to be 5 to 10 minutes of family.

I support my husband wanting to be very specific in his healthcare power of attorney/living will. He looks at it as an out to this horrible disease. I am concern that even though he is specific will it be honored in the medical world?!

Thanks so much

midge333

I hope your DH's wishes will be honored if he gets them in writing. In retrospect, I think I was naive at the beginning because I had no idea how my DW's dementia would progress. In 2016, when we had her documents drawn up, she was clear that when she no longer recognized me or our children, she wanted her insulin stopped. We have not yet reached that stage but it is rapidly approaching. My concern is that because of her anosognosia, she will not say that she is ready to stop her insulin. I am certain that my DW's 2016 self would not want to be alive now yet she does ask to stop her insulin. All that said, no matter how well you have it all laid out on paper, as your DH's spouse, you will be the decision maker in the end. Your DH can lay out the criteria for stopping his insulin but he will not have the cognitive ability to recognize when he has met his criteria nor will he be able to implement the plan. It will fall on you. I am willing to accept that responsibility for my DW because I love her and do not want her to suffer. There is nothing good about living with end stage dementia.

Bestillmylove

https://alzconnected.org/discussion/comment/235986#Comment_235986

My heart aches for all that are in our shoes. We are struggling with the clear wording/wishes of the severity of dementia required to stop insulin. Right now, the wording in his document just states that he wants his insulin stopped in final stage/stage 7. I don't think that is good enough. I know that no matter what it's going to fall on me, but I just want the wording to be very specific and more than just that final state wording. I appreciate you sharing your journey and suggestions.

midge333

I would recommend using "severe dementia" rather than stage 7. If you look up stage 7, it is a miserable state and I really doubt your husband would want to wait that long. You also want to have some latitude if he were to develop some other illness, e.g., stroke, heart attack, cancer, pneumonia, etc, that might push you to withdraw insulin.

Bestillmylove

Thank you so much for your guidance and suggestions. We will be reaching out to our attorney this week to amend the Living Will.

harshedbuzz

@Bestillmylove

I agree with Midge on not using stage 7. Medical professionals use a 3-stage model of dementia that aligns more with treatment— mild, moderate, late-stage (severe) rather than the 7-stage model caregiver do that is based on care needs. I would ask if insulin withdrawal can be tied to qualifying for hospice.

Another thought is that you both may feel differently about him recognizing loved ones as a line-in-the-sand should it come to that. It's really hard to know how you'll feel in advance.

My dad died from complications of aspiration pneumonia hours after we'd had a lovely visit. He was hazy on some family members but knew mom and I up until the very end.

My aunt, who was kind of living in the past, confused me for my mom and was always happy to see me. She enjoyed the activities and other residents in her MCF for several years after this. She was kind of an outlier. Even her hallucinations were pleasant— she'd look out the window and describe the view from her cottage overlooking Casco Bay despite being 100 miles away.

My friend took care of her mom who did get to a point where mom didn't recognize her. This was very upsetting for my friend. Her mom thought she was her favorite of the nurses who came. Mom used to gush about her darling daughter to "her favorite nurse" and talked about introducing them as she knew they would become great friends.

HB

Bestillmylove

https://alzconnected.org/discussion/comment/236031#Comment_236031

Thank you, HB. I completely understand that it is going to be hard to know how you feel about situations in advance. I think the thing my husband is trying to avoid is reaching a severe stage and continue to suffer for years after.

Since his diagnose which was under a year ago at age 57, he has already progressed more than my heart can handle some days.

I met with our financial advisor yesterday to see if I can retire early to have at least some time with him before he gets any worse. He deserves it. He deserves to have some fun. He has work so hard his whole life but has been officially robbed of his golden years.

I pray as he continues to progress for guidance & strength.