My mother is 69, a three time cancer survivor, three heart attacks, and a stroke. Since her initial diagnosis of lung cancer ten plus years ago, she has been on and released from hospice twice. We are told her cancer is "still". She lives at home with my sister, who is her primary caregviver, I live around the corner and help out when I am able to. We actually are so at a loss lately. Her weight has not been above 75 pounds in over two years. She had her stroke a mild one in the spring, but is very mobile, and her speech was not impaired. However at the time of the incident she would not consent to any further tests (including an MRI) she takes the same attitude with her oncologist, who has been prescribing her pain medications for many years. The last several months, since a move, she has experienced episodes of incontinence, forgetfulness, confusion (where she is, the month, where her other kids are, etc) She has even tried to leave the home in the middle of the night. Getting her to eat anything substantial is a tremendous challenge. She'll go days existing on milk and Boost drinks, then have a few days when she'll eat actual food. Her medications make her constipated. She is on morphine and oxy's, as well as an aspirin regimen, a bp med, and very recently Prozac. She is also O2 reliant. Although, she often "fiddles with the knobs" on her machine, resulting in too high a dose of oxygen (we have since removed the knobs)
She speaks often of dying. Being ready to die. Being afraid to die, etc. She has horrific nightmares. And then...some days she's just fine. Our problem lies in that we don't know what the source of her symptoms are. In all the research I have done, I have narrowed it down to pretty much anything. Have a call in to her oncologist now, and she was recently seen by her gp (who tested her for a UTI, which she did not have)
Has anyone experienced an onslaught of issues similar to ours? And if so, any and all advice would be appreciated. Since she finally consented to my sister and I as her medical proxies, we have decided to ask for the tests she denied while in hospital last. How are we supposed to know what symptoms are attributed to what diagnosis?
Kind regards, and many thanks.
It's always sad to say goodbye.
Please keep posting.
Good moral support for you here.
As far as the pain medications are concerned you certainly can't stop them, life would be misery, she has to have them. My suggestion would be to ask her Dr to switch to a fentynal patch. That way she does not need to take pills that may upset her stomach. They are supposed to last three days but sometimes pain begins to break through sooner so the frequency or dose may need to be adjusted. You will still need to have a breakthrough narcotic available. As your mother is so thin the Dr. may be reluctant to prescribe a patch because the drug is absorbed through the fat on the upper body. There may be enough fat on her upper arms and across her upper back so it is worth a try. often at the end of life medications are given rectally which does reduce some of the side effects, but the rectum must be clear of stool for them to work. Even though your mother is not currently in hospice the nurses there may be willing to give you some advice.
A geriatrician is in itself a good idea but it sounds as though your Mom's Oncologist is handling everything just fine and accepting Mom's wishes. Many are reluctant to give up and put their patients though so much misery treating them far beyond hope and quality of life till they are just too weak to go through another test or treatment. Mom's tired, hold her hand, keep her comfortable and let her go in peace.
If your mother is ready to die, although at a comparatively young age it is important to follow her wishes and give her permission
Bethskids... my heart goes out to you and your family as you watch your mom struggle, and at such a relatively young age considering that we are living well into our 70s and 80s these days. It must be heartbreaking.
Maybe the increased in Prozac will help. Any possibility of decreasing the pain meds to hopefully ease the constipation along with the increase of Prozac. Also, my husband takes Paxil... works better for him then Prozac, not as many side effects he says, except one that's not going to affect your mom. Might ask the doctor if it would help rather then the Prozac. Good luck to you and to your mom too.
This is no laughing matter, of course, but I did find a little humor in your words when you said "ln all the research l have done, l have narrowed it down to pretty much anything". It is excellent that you have really done your homework and while, on the one hand, the tests you'd like your mom to have, to help you know what may be wrong at this point in time, would soothe your mind and give you comfort that you had exhausted all possibilities, your mom seems like she's out of state of exhaustion and doesn't WANT any more possibilities. As I'm sure you know, when your appointed as someone's agent for a health directive, the purpose is to follow their known wishes and not override them. You and her doctor(s) is/are at sort of a limit when it comes to anything else medical because, as you so rightly stated, you have to respect her wishes.
Now would seem to be the time to call and something religious, spiritual or meta-physical, whatever the beliefs are. But while you are hoping and praying to improve the quality of her life (very loving and life affirming), she has turned her back and/or closed her mind to therapy, counseling or clergy. If she has always been this way, it's another facet of her personality you will have to support. I know with my mom, it was frustrating to me that she would not speak of anything to do with a higher power or universal energy. Even within her last stages of dementia, any attempt to mention or bring up "the other side" gave her grief. The one thing she did tolerate was that she would soon be able to see Daddy, her mom and dad, her aunt (who raised her, as both parents had died by the time she was 9), her brother and sister, her grandmothers and your other aunts and uncles. Maybe some of her old friends too. Our conversations included if she had seen any of them in her dreams and she was very perky about her feelings that she had seen and talked to them some of the time. It what is a form of counseling, and was the best I could do since she was not interested in any outside sources.
The rest of what I'm going to say is in regard to the physical/medical. I am a nutritionist and could come up with any suggestions but that is really inappropriate since she is not my patient and I am NOT working with her doctors. She has had far too many things causing her body to break down and become frail, really a dynamic interaction of conditions, illnesses and diseases. So, l'm going to tell you how I solved my own personal constipation problem after being on narcotics but states very clearly, even though this is a simple, non-toxic food solution, do not begin this or anything else without approval from her doctors.
What I want to tell you is constipation does not only contribute to a decrease in hunger, but also to intestinal toxicity that becomes systemic (gets into your bloodstream) and can lead to dementia symptoms because of what I'll call "brain fog". The problem with not having bowel movements is that fecal matter stays in the intestinal tract much longer than it should. Pooping, like urinating, is the body's way of getting rid of waste material. The intestine however, likes to be responsible for absorbing nutritional matter. If everything is working perfectly, the waste material is moving through the intestine quickly enough that toxic waist is not reabsorbed into the body. This isn't true when the intestines are sluggish. Older fecal matter, with all of its attendant bacteria and other toxins is moving slow enough to allow those other buy products to be reabsorbed back into the body. You can easily understand the physiological effect on the brain and other organs once this toxic material gets into the bloodstream. If you're getting the idea that I believe not enough emphasis is put on the importance of proper pooping, you are correct.
So, with your mom's doctor's approval, l suggest prune juice. The only true objection to prune juice that I know of is if one is a diabetic. They can't take Lactulose either because of high sugar content. Folks have told me that prune juice does not work for them. But prune juice WORKS. lt ALWAYS works. ALWAYS! lt's just about regulating the amount in opposition to what is causing the constipation (narcotics in your moms case). Now, I kind of like the taste of prune juice but drinking it straight and cold from the refrigerator was a bit overwhelming if I needed, say, 6 oz. Gag... I discovered it was easier to drink it at room temperature. That's an easy one for two to four ounces but if more is needed, I found mixing it half and half with milk made a very palatable drink. Since your mom likes milk, this should be an easy match for her. You just have to juggle the dose based on her daily situation. If she is constipated at the outset, you may have to get her unconstipated with a laxative the first time.
In my opinion, keeping her bowel working properly, and allowing her to be less toxic systemically, is going to make it easier on her brain and other organs. It is so important that you must make this a form of regular reporting to the doctor and if for some reason to prune juice is not approved, you MUST insist on some other form affective laxative. Doctors are fond of the bulking laxatives such as Metamucil and DulcoLax because they don't deplete the muscle tone of the bowel (what a laxative does: makes the bowel LAX). They may work and they may not but your mom need something THAT WORKS. At her stage of health, keeping her detoxified is of primary importance to prevent brain fog, just as important as making sure the patient doesn't have a UTI. My point is that in her condition, you shouldn't worry about her becoming habituated to laxatives if laxatives are the only way to keep her having regular BMs.
One more thing I just thought of. You mention your mom drinks boost. That's fine but check the calorie content. I think it's about 250 for one 8 ounce bottle and I'm not sure if they offer a more caloric version. Regular Ensure is also 250 but I believe Ensure Plus has 350 calories so you could increase her caloric intake with no additional volume. Hopefully she also stays hydrated. Prune and other laxatives rely on drawing water to the bowel. PowerAid Zero is a good electrolyte water but it does contain sucralose so you just need to be aware of that. Again, do nothing in your moms case without doctor consultation.
I apologize for this being such a long post. I didn't know how to make it any shorter without breaking it up and I didn't want to do that either. My best thoughts are with you. Please let us know how you're doing and ask any questions you need to...hearts...carol
I was somewhat satisfied with his involvement, although I would have liked to known what if anything those scans would show, I have to respect her wishes on certain things. Our biggest goal is to improve her quality of life.
She has already said no to any outpatient therapy or counselling...typical of her, lol. No clergy. Hoping and praying that the small changes we continue to make will help us help her.
If a Geriatrician isn't available, try to find one doctor who can coordinate this whole situation and help you decide what tests should be done. Your mom may be showing dementia signs because of medication interactions, drug reactions or chemical changes in her brain. Or - her cancer could have spread to her brain. She definitely needs tests. Good luck to you. This has got to be very hard on you all.
Carol