<p>First time posting on this thread: my 91 year old mom has lived with us for the past six and a half years. She is in poor health with congestive heart failure and stage 3 kidney disease. She has dementia, mostly short term memory loss. My husband’s description of it is that her hard drive is full :)!
She has had a number of hospitalizations over the years. It seems to me that the minute she gets to the hospital delirium begins and doesn’t diminish until she gets home.
Nineteen months ago I called 911 and rushed her to the hospital with extreme abdominal pain. she had a perforated bowel caused by colon cancer. They biopsied in 18 other places and found no further evidence of cancer. The hospitalization was the worst. Terrible delirium and paranoia and non stop IV antibiotics for 2 weeks which caused uncontrollable diarrhea (not c-dif, thank goodness). Then the wound dehisced resulting in another surgery to repair. Horrible, horrible for her, for me. But she got through it. She did end up with a sizeable surgical hernia but it was manageable.
Fast forward to 10 days ago. She has the appetite of a bird and I supplement with ensures and ice cream. She has frequent constipation but we manage with fresh fruit, plum juice, and stool softeners. I was moving into high gear to get things moving when she began throwing up. Off to the hospital where she was diagnosed with a small intestine non mechanical blockage. She was also completely impacted - pretty much stem to stern. For 10 days she has been allowed nothing by mouth. A pic line was installed a couple of days ago and she is getting IV nutrition. She has a suppositories and other bowel assistance every 8 hours and things are finally clearing somewhat. She has lost 10lbs and now weighs 103lbs.
She had a barium xray last Thursday which showed there was still partial blockage. They started her on clear liquids which caused more vomiting so they backed off. She has still had no natural bowel movement.
A second xray yesterday has found that the barium has made its way down through her colon. After that xray the doctor called. Looks like the small intestine blockage may be related to the hernia with her small intestine slipping in and out. But the xray is showing a potential tumor in the colon. The doctor said they wouldn’t know for sure unless they did a colonoscopy which he is not recommending because of the prep, her age, etc. etc.
And, honestly, I’m not sure she should be subjected to surgery if it is, indeed, a tumor. It was so terrible for her last time around. So, is it time for me to say enough is enough for her? But then I’m not at all sure I can do that. I am so unsure what is the best to do for her.
Thanks for letting me share with you all.</p>
<p>Oh Bonnie I’m so sorry! Hugs to you. Do you have any sense of what her wishes would be? It does sound to me like it might be time to call in hospice - those folks are so so wonderful for you (the caregiver) as well as the patient. If they’re not yet involved, please do strongly consider calling them in to help you all. Love to you!</p>
<p>So sorry for all the cascade of troubles…no way would I subject this woman to another surgery. I would say hospice to keep her as comfortable as possible. </p>
<p>My aunt, in her upper 80s and with dementia, was diagnosed with breast cancer. My father wasn’t sure what to do until the surgeon said “If it was my mother, I wouldn’t operate.” Sometimes less is better.</p>
<p>I too thought of hospice. They can help her be comfortable. Ask the doctor if he can refer you to palliative care or hospice.</p>
<p>You have done a lot for a long time. Best wishes.</p>
<p>Bonnie, sending hugs and virtual support. Hugcheck asked if you might have an idea of what her wishes would be. Does she have a living will or health care directive? You have taken such good care of your mom over the past six years and having her live with you and your family must have been a great comfort for both of you. Before you make a final decision, is there the possibility that a noninvasive diagnostic test is available? If not, I hold hospice in high regard. A case manager at the hospital can help to coordinate evaluations by hospice.</p>
<p>More hugs for you, Bonnie. I agree with the posters above: what would your mom want?, is there a non-invasive option, and do consider hospice. You have been a great daughter and caretaker so far. I know you will make the best decisions for your mom now.
We finally let my dad go (chose not to treat an infection and put him on hospice) when we know that would have been his choice (dementia and late stage Parkinsons). It took a lot of thought and prayer to make the decision as well as some regret of perhaps doing too much intervention over the previous year, but eventually we knew it was time.</p>
<p>BonnieNJ- Sending my best to you. What a complicated road you and your mother are walking together. You know her extra well as her caretaker. This will help you make your decisions.</p>
<p>I, too, thought immediately of hospice care. My father had advanced colon cancer diagnosed post-op at age 83 and he is now 88 with moderate memory loss, but not disorientation. The surgical recovery was several months, and had some challenges. I don’t know if this helps or not, but as his health care proxy in consultation with his oncologist, we are clear that his best interest and wishes would not be served by further surgery or active treatment of the cancer should he face recurrence. Comfort would be my goal at this point. As my mother said before she died, “all my parts are wearing out”. Maybe this or that could be addressed in some way, but it didn’t change the overall picture and in many cases would have decreased the quality of whatever time she had left. Every family is different, but I have no regrets about literally embracing my mother’s end of life path with her. She never felt alone, she was comfortable and we shared so much of what mattered to both of us without the encumbrances of procedures, appointments and tests that would have changed little about her life span, but taken a lot out of her. </p>
<p>I wish you peace in your decision-making and information gathering. It sounds like she is lucky to have a caring medical team and family support, whatever path is right for this time. This is hard, though knowing what her preference would be may help, as will getting realistic medical assessments. Thanks for posting. I think it is helpful to hear how people are thinking about their options.</p>
<p>Hugs to you, Bonnie. All the posts above echo my thoughts. First: what would your mom want? More of the same, though maybe worse this time? I am a big proponent of hospice for end of life care and not continual intervention.</p>
<p>Your mother has multiple health issues and she is 91. Will additional surgery (and don’t forget to think about the recovery) improve her quality of life measurably or will it just prolong the decline?</p>
<p>You might want to talk to a hospice nurse regarding your mother before you make any decisions. They can help you see what choices there are so you can be clearer on your decision. There are meds available to keep her comfortable through the current medical issues.</p>
<p>It is okay to say enough is enough.</p>
<p>Bonnie, Such good advice from everyone. Nothing I can really add that hasn’t already been said. You, your mom, and your family, will be in my thoughts and prayers.</p>
<p>HI Bonnie:</p>
<p>I am on the same team as the prior posters, Hospice/Palliative care can be such a blessing, I especially think surgery or other serious treatments can be almost cruel if the patient has dementia. Even if they don’t have the memory to know people well or good short term memory, they are still present in the moment. None of us enjoys the hospital, but I would think it could be terrifying to someone with dementia.</p>
<p>Unless there is a simple treatment which can nearly guarantee a major improvement, I just cannot see doing that to someone who is dealing with serious dementia. I am not sure how bad your Mom is in terms of knowing what is going on, but I would imagine people who are having memory issues are very much living “in the moment” and those moments in the hospital could be miserable and seem interminable.</p>
<p>Thank you all for your kind words. I spoke today with someone from our local hospice group. She was so kind. It was just wonderful to share, to unload. I will speak with her again on Friday.
One of the big issues for me is my mom at home would no longer get IV nutrition (according to the doctor tonight). I need to check further into that with hospice. The thought of her literally starving to death is unbearable. Just don’t know that I could handle that. This is all so much harder than I ever imagined it could be.
I believe my mom would not want to go further with this. She has a living will which mostly says “no extraordinary” measures should be taken. I think invasive surgery in her condition and age would be extraordinary.
I am also meeting with a palliative care doctor tomorrow.
Thanks all for your support.</p>
<p>Bonnie- sometimes, enough is enough. You need to decide what quality of life will the surgery offer? Like others stated, look into Hospice for help/advice.</p>
<p>Hello everyone. I need some advice on where to start looking for in home care for mom. As you may remember, mom lost 50 pounds in 4 months, was hospitalized where they found she had ulcers and put her on medication. She has been maintaining a steady 126 pounds but still eats very little and seems to be forgetting things more and more. Although- she remembers her driver’s license expires next month! go figure.</p>
<p>Ever since we came home from our Hawaii trip, she has gone downhill- not eating like she should, not speaking up, not walking, sleeping a LOT. Her right leg still has pain, but the doctor can’t figure out why. I need to make another appointment for her for a followup but have been super busy with the kids and school starting back up.</p>
<p>Every time I mention to her that we can have someone come in and help around the house- I get the “I don’t need any help” spiel. I would like to have someone come in 3 times a week to help her do things- bathe, laundry/clean, assist in …? What’s the best way to find someone reliable, bonded etc? I’d like to get a person in before April as I have a week trip planned for DD to check out schools. We’ll be gone for a week and I would like to have someone that mom knows and that can possibly expand their hours for that week.</p>
<p>Another question- my sister has mentioned that she would like to come and stay with mom for that week that we are gone, but she’ll have to look into her finances to see if it’s doable. Considering that she’s good at the ‘talk’ but not so good with the ‘walk’ should I wait and see if she can come and if she says no, offer to pay half her plane fair? I’d rather not, because she and her hubby are always spending money on things they don’t need and going on vacations when “we’re broke and can’t afford anything”. But this would give her some alone time with mom.</p>
<p>so any ideas? thanks for the help.</p>
<p>Bonnie, I am glad that you were able to talk to someone from hospice. Please ask them lots of questions and don’t settle if they are not the right group. There are differnt hospice companies and you have a chioce. Ask if there exceptions made to policy, consider if the nutrition is extending the inevitable, I don’t think anyone in hospice care would feel that they were starving. I have also heard that at some point the nutrition feeds the cancer faster than the patient. Talk to palliative care too and ask all your questions. I hope that they can help you carry this challenge that you have been carrying for a long long time.</p>
<p>Chuck, I would try to make plans to care for your mother independent of your sister. It would be great if she came, something besides finances may also interfere with her trip and it would be great to have plans in place. One suggestion to find in-home help is to call a local senior living place and ask if they have an agency that they use. Sometimes cities or counties have a senior citizens agency with a social worker helping seniors, that person would be able to recommend agencies also.</p>
<p>Best wishes to both of you.</p>
<p>Bonnie-glad you were able to speak with hospice. As you consider options, feel free to ask your experts how it would play out if X or Y happened. I found that my assumptions about exactly what certain things meant was not always accurate or precise. Finding out more about the context of not having IV nutrition will help you sort it out. I am glad that you have a sense of what your mother’s preferences are. That is a huge piece of the puzzle.
Best to you at this hard time. </p>
<p>ChuckleDoodle- I agree with Denise on separating the sister visit from your Mom’s needs. I know what semi-reliable “help” is and it is not peace of mind. If sister comes, fine. She can still visit your Mom while the caregiver does their part. </p>
<p>Once it is time for more care and an elder is balking, these logistical situations can be your best ally and advance what needs to happen. You are wise to anticipate her needs when you are away and take advantage of this to find the right person/s and bring in help sooner rather than later. Once someone is in the house, your mother may form a relationship that puts you all on firmer ground. I think it is important to have any plans reflect your preferences and comfort zone. I always am available for feedback or troubleshooting, but making this all work well requires pro-activity that may conflict with the elder’s wish to push it all to the back burner or their unfamiliarity with the fact that finding good help is a process. </p>
<p>Possible sources of reliable help: recommendations of agencies from local assisted living or rehab facilities, Council on Aging offices, visiting nurse associations, town health office, local clergy, hospital social workers, peers caring for their elders, friends and neighbors, geriatric care managers or private geriatric social workers, physician’s offices. Many people prefer bonded agencies so that a back up plan is possible if the caregiver is sick, etc. Others have good luck with one reliable person recommended by a known contact. In some areas there are agencies that provide options for both elder and child care with personnel trained and vetted. Good luck with all this. If your mother needs help ambulating, dressing, showering, etc, it is important that the help has had training or certification to do it all as safely as possible. </p>
<p>Good luck with this.</p>
<p>My grandparents are having a pretty rough time. My grandma has alzheimer’s and it is getting worse- recently she couldn’t even boil water. My grandpa is doing fine however he got a worrying notice from the doctor about abnormalities in his blood works and has to go back. Recently my dad and him discussed moving out of their current gated community and into an assisted living home or perhaps even my home. Both were crying and for the first time in a very long time. It’s sad and frustrating to see their health deteriorating like this.</p>
<p>Both are in their late 80s and had fulfilling lives, and getting old sucks but it’s part of life.</p>
<p>When a person is dying, it does seem that frequently they stop eating, by choice, as part of the mechanism of shutting down. Does your Mom want food? If not, and if she is really ready to die, the nutrition may be a hindrance rather than a help to the natural process. You might ask the hospice people about that.</p>
<p>Also, I agree about your sister. In most cases the primary care child is happier once they realize all responsibility is on them. Don’t plan to get help from siblings, don’t rely on them, but do accept it when they can do something. Just don’t get suckered into planning on it. Avoid the disappointment. And take joy in the times they do offer something, anything.</p>
<p>I have also read the Kaiser (a HMO) hospice materials that as the person is dying they are busy with inner preparation and start paying less attention to the external world, often includes sleeping more and eating and drinking less. It seemed accurate in the most recent death of a loved one that we were with until the day before she died of cancer.</p>
<p>Just chiming in to say how much I am learning from everyone’s posts. I realized when my sister-in-law died after an excruciating bout with cancer that the oft-heard phrase, “She died peacefully” was as true as “childbirth is not painful”. Little lies that help us get by without dreading the realities of life. My mom is relatively healthy for 86, but the mental and physical decline are progressing. It has helped me to read how others have dealt with the decision making as this process continues. Thank you to everyone for sharing your stories.</p>
<p>Actually, my loved one used morphine placed under her tongue to help make her more comfortable and help with her difficult breathing. My understanding is that even though she had cancer she really DID die peacefully. The time before she died was indeed extremely uncomfortable/awful for my loved one, as she had a LOT of difficulty holding down ANY food or beverage, including water. Different folks have different experiences. </p>
<p>For what it’s worth, for the most part I did NOT experience pain when each of my two children were born and did NOT use anesthesia except for stitching the episiodomy.</p>