Pick my Battles?

Recej

My Mom is 91 with early late stage Alzheimers. We have been able to keep her in our family home. I have a full time live in care giver to help me. She's no longer ambulatory, verbal but seldom makes sense and is very hard to transfer because she really doesn't want to be touched. My Dad is 94 and still lives in the home as well.  His emotional state is one for another time but he still is involved by being present for my Mom.

My problem is the myriad of medical problems. It's like Whack-a-mole.

She needs 2 nebulizer treatments a day and if she's not monitored closely and encouraged to breathe deeply she won't get the full benefit of the meds and her oxygenation dives. This is a deadly scenario!

She has chronic UTIs but is on a daily maintenance med for prevention. However if she is combative and won't let the caregiver or myself change her when needed she gets a UTI nonetheless. These are also deadly as you know.

I discovered mouth sores and bleeding gums last week! Very painful and inhibits her willingness to eat. And she already has a very bad appetite.

Her skin is crepe paper thin and it gets torn accidently about 5 times a year. Big wounds!

She had another TIA a week ago and the weekend CG injured her arm.

All of these things have been brought of to her Dr's, her caregivers, my sibs (who aren't involved much) attention numerous times. The Dr's act like "Well she's 91. What can we do?"

And my sister says that this is just how it is.

My promise to myself is to keep her happy and pain free.  But now I'm feeling like this goal is further and further out of reach. 

Sorry so long.

ButterflyWings

Hi Recej - Yes we do have our pick of serious issues to choose from every day with this disease don't we? Welcome -- though we all wish there was no need for such a group, it is a very good one.

I promise I am not on the hospice payroll or investment plan...but, is she currently with a hospice/home care team to supervise her medically? I ask, because it is not the end of the road anymore (many here have LOs in hospice care at home or MC for years). But they have wound care specialists, a nurse visit every week, and also 24/7 phone access for anything that might come up. Plus the meds and respiratory issues can be monitored and adjusted if needed. Also a CNA for bathing and/or grooming assistance and the help getting her changed, UTI free etc -- may make your lives so much better. It does not replace your current plans, docs and CG, but adds a layer of support that many have found extremely helpful at this stage of the game.

Wishing you all the best. Active comfort care is what they do (my DH is 7+ months with a very proactive hospice team) and it seems like you are seeking that. 

zauberflote

Hi Recej, welcome, although we are always sorry someone has reason to be here. You will find this a most supportive community, with collective knowledge and experience that takes the breath away. 

You are a very loving daughter, and it sounds like you are very on top of  your mother's situation, whether or not you are always successful. 

My MIL, whose medical issues greatly eclipsed her dementia, was on hospice for the last 18 months of her life. (She remained at her home, with 24/7  caregivers, and her 4 children+spouses to wrangle the caregivers.) Hospice was called in on the recommendation of someone's friend, I think. Hospice chose MIL's COPD as her hospice dx, and took care of many other issues as comfort care. MIL was on oxygen by perhaps 92 (she died at 93 1/2). The caregivers helped keep the cannula in her nose much of the time. MIL could not breathe deeply, and didn't tolerate the neb pipe or mask at all well, so we just went with "even a little bit is better than nothing". As the lungs grew worse, the albuterol rescue was in play more often. 

Changing her was an adventure, but fortunately she never had any personality changes, so was her usual gentle self for the main caregivers, whom she loved. 

She was pretty near deaf, mostly blind from macular degeneration, had had two noticeable strokes and maybe some TIA's, several stents in leg blood vessels (it was that or amputation....) had two pinned hips and a cracked pelvis, and some nasty bouts in the hospital with cellulitis. Hospice has to discharge a patient if they are admitted to hospital, but we always picked up again right where we'd left off.  

If it were my mom in your mother's situation, I would look into hospice. (Actually, my own mom went on hospice while she was still walking, talking, and eating well!) 

Others will soon be by to help out, I'm sure!

zauberflote

Haha Butterflywings and I cross posted. I'm not on any hospice payroll either!

Recej

Thank you so much for your kind reply. Our CG is a certified CNA, CHHA.  None of Mom's Dr's suggest that she is at the hospice stage. She doesn't qualify for Medicare or any free in home services. Her CG is expensive. I'm feeling very helpless.

Recej

Correction... she doesn't qualify for Medicaid.

I can't find a DSHS caseworker to evaluate her because she doesn't have Medicaid. She has no long term care insurance.  But she does have private health insurance. 

terei

You dont need anyone else to ‘suggest’ hospice.  I would not delay getting an assessment ASAP.  Call one or more hospices in your area + request one.

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ButterflyWings

Hi again - yes, that's right, hospice is covered by your LOs Medicare insurance, and there is no additional out of pocket cost to your mom. She is entitled to these additional in home services and we are urging you to just call one (or two) of the local hospice agencies to have her evaluated. Find out what they recommend  and then you can decide from there.

Our Drs never mentioned hospice either, but they did not know everything that DH (and I) were going through daily. And it is possible they actually did not realize that hospice is not just for the last few days or weeks of life. It is to provide exactly the kind of safety net support your parents (and you) could use right now it seems.

For us, just having a nurse visit DH each week is a huge blessing by itself - our CNA is wonderful but is not a nurse and has no more expertise than I do (less actually, for my DH's specific medical conditions). His meds are delivered to our door free of charge, as are incontinence supplies and toiletries to keep him clean and groomed. And any equipment needed for your mom's safety and comfort is also delivered, set up for you, (hospital bed, floor pads, wheelchair, broda chair, etc.) and should she need more oxygen at 2 a.m., it will arrive following your call to the 24/7 hotline. It has been a real asset to us. Helps stretch limited funds and provides a backup team for this very demanding AD plus chronic respiratory condition.

I can't recommend hospice more highly based on what you have described as her current needs. Yes Zauber, we were both thinking the same thing at the same time!

Stuck in the middle

Hospice was a blessing for my mother when she was in your mother's position.  Keeping her happy and pain free is what hospice does, so I really recommend you look into it as a means to accomplish your goals.  

We used a faith-based hospice, and a chaplain visited weekly.  A wonderful, silver-haired lady, the chaplain even spoke at Mom's funeral and sent me notes at intervals for a year afterward.