What if you can not take it anymore !

Brokenhearted in Illinois

Tonight my DH watched me cook dinner vacuum, wash and dry the slip covers on the couch and then asked when I plan on going home tonightThe he locked the patio door snd I could not get in. I am sitting on the patio taking a break before I have to

clean him, change his depends, brush his teeth and make sure he removes his false tooth. So his mouth does not get inflamed Oh yeah he has Leukemia and his doctor at Mayo Clinic does not want to treat him “ you need to be treated in Chicsgo” I have to find a new doctor I hate it when the nurse at Mayo says “make sure you take care of yourself” How shallow They should be asking how then can help

us take care of ourselves. I a committed to making sure DH has the best possible life but it seems the universe is against us .

housefinch

Is there a specific reason he can’t receive treatment locally? Or have you considered asking if he should even receive treatment at all? I don’t mean to sound unkind or uncaring. I don’t know where you live or how far away Chicago is vs Mayo. I am wondering if there’s a physician or someone who can look at the whole picture with you to help decide where he should get treatment and what kind of treatment is appropriate. @M1 may have a better understanding than I do. I am thinking that balancing quality of life for you, your loved one, etc, are all important. Do you know your loved one’s wishes about medical care before he developed dementia? These are questions I would be asking before making these decisions. Sometimes physicians think only about quantity of life, especially in Hematology/Oncology, and will offer any chance at life extending treatment regardless of the bigger picture. (I’m a physician).

Quilting brings calm

I would ask if he is even capable of having the treatments. If he’s not capable of sitting still for the necessary amount of time, allowing infusions if needed, shots if needed, following instructions, allowing medical personnel to poke and prod him, etc - then he may not he able to be treated. If Chicago is a distance from you, he may not tolerate the travel time added to the treatment time.

If he doesn’t understand that you live with him, he’s probably not going to understand and cooperate with the treatments.

M1

My heart goes out to you. I hope he let you back in the patio door.

My first instinct is that there's no way on God's green earth I'd put him through any leukemia treatment, based on what you're describing regarding his dementia. I take it you're probably dealing with a chronic leukemia rather than acute? I know this sounds radical, but i wouldn't even check his blood counts. Id call for a hospice evaluation and make sure he's comfortable. I pray frequently for my partner to be released from her suffering, and she's not even incontinent yet.

We have a related dilemma in that she has an indolent but ultimately incurable type of lymphoma. We quit monitoring it over two years ago. I sometimes think it would be a blessing for it to recur and be her cause of death.

Brokenhearted in Illinois

Thanks to everone for your thoughtful responses. We do live in a suburb of Chicago so being treated in the area is not a problem. He went to Mayo Clinic as he was there treated in 2017 for HCL leukemia. It just reoccurred in February of this year. Mayo I’d s center if excellence for this . DH loves life and does not want to give up on living. The problem is that no one really wants to

talk about the prognosis of these co morbidities. The goal is not to accelerate the AD when treating the cancer. How can we get a handle on his AD? No one wants to speak openly about the prognosis for that. so frustrating.

laurielou56

I understand what you're saying. I'm having some of the same issues, they've just started. For some reason, he thinks our house is not our house and that we have another one. I ask him where it is, and he says, "Over there," pointing vaguely in a random direction. I'll try to get him to understand that this is, in fact, our home, showing him that all of his things are here, etc. His response? "When did you bring those here?" We've lived here for 15 years.

He doesn't recognize me sometimes. He asks me where I am (meaning I am not me, and where am I.) It's like he recognizes my role as his wife, but not that I am that person. I am also raising my 13-year-old grandson and he is fixated on where he is all the time. If he asks me once, he asks me 100 times, "Where's E?"

He tells me stories or asks questions that have no grounding in reality at all. Sometimes I can just crawl into his fantasy and hang out with him there for a while, but there are some things where that just doesn't work.

This is a man that drove a truck cross-country for 30 years and helped build a good chunk of the local infrastructure driving construction dump for another 20. He could tell you how to get to just about any place, anywhere in the lower 48. Now? Now he has to ask me every time how to get to the bathroom that is 20 feet away.

This is just the tip of the iceberg. I am considering counseling - have you thought about that? Sometimes I just need someone to rant to. I feel so alone.

Brokenhearted in Illinois

Yes I have many of the same issues with DH. I have thought about therapy. The truth is no one does understand except those of us are going through it.

i need to let go of my DH and let him go too. And I do not want to let go yet. He has declined in every way so quickly within 28 months it is hard to wrap my head around what is happening to him -to us

Brokenhearted in Illinois

Please reach out any time you want to rant.!

😜

BPS

https://alzconnected.org/discussion/comment/192042#Comment_192042

This is just the tip of the iceberg. I am considering counseling - have you thought about that? Sometimes I just need someone to rant to. I feel so alone.

I Have found a counselor that understands Alzheimers I have gone to him a couple of times, not on a regular basis and I told him I will be back. He know that I am coming to be able to express my feelings and that I am not really wanting to set up regular meetings I just need to vent once in a while. Lasty time I was in we talked a little about other medical problems and he said the same thing that others here have said. A lot of doctors want to treat one aspect of a persons health not looking at the whole picture and sometime that is not the best for the patient and can cause unnecessary stress diminishing any quality of life.

Anna2022

I found a therapist who understands dementia. I attend zoom sessions with her every week. its not traditional counseling, more like coaching - I tell her things that I am feeling and thinking that I can't tell anyone else. It has been extremely helpful! I encourage you to find a therapist who really understands the dementias. My Medicare Advantage Plan has covered all therapy expenses so far.

midge333

As others have said, I too recommend that you not treat his leukemia. Palliative care and ultimately hospice seems like a more reasonable approach. You don't want to block his exit ramp and prolong his (and your) misery.

mrahope

I would second what others have said about counseling for yourself. Because you are seeking counseling does NOT mean you have a mental illness. I, too, found out I needed a place to safely vent my feelings and talking to a counselor has been a god send on many occasions. She has also pointed out some things that I was, um, too close to the situation to see. And yes, my Medicare Advantage covers all but a small portion of the cost.

housefinch

I’m very sorry you’re in this tragic situation. I don’t think allowing someone with a fatal brain disease to make decisions is the answer. I think seeking grief counseling to work towards acceptance of devastating circumstances is the path I would take myself. I have been in different devastating circumstances personally (and continue to be) and professional help to process it has been my lifeline. My PWD is my stepdad, so I don’t want to imply I completely understand your situation. However, I have endured terrible grief and loss which is unrelenting and highly recommend seeking professional assistance to process it if that’s something you are open to. Sending you strength.

M1

Rereading the thread brokenhearted. You do sound so conflicted-you are at the end of your own rope trying to care for him, yet you possibly want to treat a leukemia that he probably doesn't know he has and for which he can't understand the implications. Perhaps counseling would help you work through this one. I would look hard at questions about quality of life for both of you. I don't see how treating his leukemia could possibly contribute to improving quality of life for either of you. But ultimately, you are the one who has to make those decisions and be comfortable living with the consequences. Many have recommended the book entitled Being Mortal- I have it on hold from our library so can't give you my own take on it yet, but it's mentioned frequently on these boards which is why i ordered it.

June45

https://alzconnected.org/discussion/comment/192038#Comment_192038

I am not a doctor, but I agree with M1 100%

Iris L.

There is a book, "Hard Choices for Loving People" that discusses end of life decisions. It is available in paperback and online in pdf. Members have found it helpful.

Iris

Brokenhearted in Illinois

Thank you Iris. I will take a look at it. I am hoping that DH can still make the decision on treatment for cancer I did bring up the subject snd it seems he still has an understanding that the cancer treatments have itheir own risks . We only get one life. I have learned there are no do-overs My understanding is that his two comorbidities Alzheimer’s and HCL Leukemia are independent of each other - DH will pass from one or the other

Ragfoot

This is my first post, but I've read a lot of posts on this site. I have to mention, just reading what others have been writing has been a tremendous help for me. My DW, I think, is in her 3rd or 4th year. This subject hit a nerve with me and felt it was finally time to speak. IMHO, I personally see no reason to try to extend the life of someone with Dementia. Even before my wife started losing her short term memory, we were both of the opinion not to artificially attempt to extend our lives (and filled out the appropriate papers to that extent). BTW, she is in her mid 70s and I'm late 70s. During the earlier stages of Dementia, I listened to my wife complain several time a day for a couple of years "I wish I were dead", or "please kill me", or other variations. I suspect the disease has progressed, since I haven't heard those phrases for about a year now.

Again, just my personal feelings, I would do nothing to try to extend the life of someone with dementia. I can understand the selfish reasons others might want to (we don't want to lose a loved one), but what about quality of life for the LO?

At this time, my LO only lives in the moment. A few minutes later and that moment no longer exists for her. So, I try to keep her as happy and comfortable as I can, in the moment. But, I won't do anything to prolong it.

harshedbuzz

@Brokenhearted in Illinois

I am so sorry for the gut-wrenching situation in which you find yourself.

I agree with those who suggest a talk therapist and perhaps medication for you. Dementia caregiving is next level pain and stress.

I also feel as @M1 and some of the others do. You are describing a man in late-stage dementia. Moderately severe stage 5 if urinary incontinent, severe stage 6 if bowel as well. At best, based off DBAT, he is at a point where his life expectancy could be 2-4 years depending on how long he's been at this stage and how quickly he's progressing. His quality of life will continue to deteriorate.

Choosing not to act could be a kindness. Many of us as our loved ones progressed into the wordless, bedbound state subsisting on pureed foods pray for the alternate "exit ramp"-- the gift of some condition that would relieve them of this hell before the pain of contractures and bedsores starts.

If the treatment is some sort of easily administered and well tolerated chemo that could be taken orally at home without frequent blood draws I would consider it. My dad was treated for a recurrence of prostate cancer starting in stage 4 when he was yet to be diagnosed with dementia. Long story there. Given his life expectancy at that stage and the fact that the treatment was just a twice-yearly injection to help keep the cancer out of his bones, it made sense. He had a significant drop in cognition with the first injection; maybe a coincidence but I'm not sure. In the end it didn't matter, his disease progressed rapidly and he was dead 2 years after the first shot.

One problem with medical specialists is the old 10 Blind Men and the Elephant syndrome. The oncologist knows one thing-- treat cancer. S/he's not seeing the bigger picture of weighing the "benefit" of killing off some rogue cells vs making a person with a terminal illness spend a good percentage of their remaining time traveling to appointments and feeling sick.

I know two people personally who elected not to treat cancer in their LO. One was a gentleman from our IRL support group. His darling wife developed colon cancer several years after being treated successfully. He's a retired surgeon and struggled mightily with the decision discussing it at length with their large family who decided that the treatment would be painful, confusing and hasten her disease progression. He brought in hospice which kept her pain manageable.

A dear friend's mom developed breast cancer in her early 90s when she was in about stage 5. Starting at 75, mom stopped getting mammograms stating that she'd nursed several friends and sisters through breast cancer and would not elect to treat at her age. This made my friend crazy at the time, but she knew her mom's feelings and did honor them. Her PCP managed her care at home and they brought in hospice when more powerful pain management was needed. Mom retained her mostly lovely personality through this and had as nice a quality of life as is possible and passed gently in stage 6ish.

Wishing you peace whatever you choose.

HB

Denise1847

https://alzconnected.org/discussion/comment/192118#Comment_192118

Hi Brokenhearted. Just consider that if your DH doesn't grasp that he has Alzheimer's, then he will not factor it in to the decision to treat the Leukemia. My DH would opt for treatment because he has no understanding of his Alzheimer's. I, however, would opt for him to have a peaceful journey.

Emily 123

Brokenhearted, have you asked for a palliative care consult, with the specific goal of taking an eagle-eyed view of your DH's healthcare? They are not hospice, but would be able to look at the care and treatment options in aggregate and discuss your options with you.

Just a thought. It's hard to make choices for someone.

Quilting brings calm

Broken ….your spouse didn’t know who you were and locked you out of the house. You mentioned cleaning him, brushing his teeth, etc. implying that he’s no longer capable of doing ( or deciding to do) simple things.

In different discussions, you’ve mentioned his difficulty walking, his anger outbursts, getting kicked out of adult day care and that he’s between stage 5 and 6. You also mentioned he seems to decline every 3 months or so

Yet you feel he has the mental and emotional decision making capacity to decide what to do about leukemia.

You are going to have to make this decision. As you mention, dementia and leukemia are fatal. Dementia cannot be cured and is a one way disease. Please take some time to research stage 6 and 7. There’s been discussions here from several people whose loved ones are beginning stage 7. I think most of them wish they could have spared their loved one this stage.

I think a counselor ( not one with rigid ideals) could be of help to you while you are making this decision.

June45

Another good book to read. It has been posted before....

Being Mortal: Medicine and What Matters in the End

Atul Gawande

gampiano

I just have to weigh in on this, and say that I agree with Quilting Brings Calm. Stages 6 and 7 are difficult enough, Ive been through this. It would have been cruel to put my husband through chemo at these stages. Let me put it another way, and use the word nightmare.

Fortunately for me, and for DH, the devastation of stage 7 was rapid, and mercifully, he passed after a few months. I recommend that you have your DH evaluated by Hospice. They are a Godsend . You can always decide not to use them, but I think you need to consider it. They also have great counseling, spiritual advisor if you need, respite care and so much more. Please...

from someone who also was locked out on the patio.

upstateAnn

Counseling is so important…..

Cherjer

https://alzconnected.org/discussion/comment/192106#Comment_192106

Wonderful book and read it years ago and still have it. I would suggest you buy the book!