Understanding late stage

hiker88

Good morning. My mom is mid 80s and was diagnosed 7 or 8 years ago. She is definitely in late stage 7. When I read the chart she hits most of the makers. She no longer can walk and has not been able to do so for a couple of years. She needs assistance for everything. She can no longer hold her head up. She tends to lean to one side a lot. She is on puréed food only. She maybe utters a word now and then. I think she smiles sometimes but it’s hard to know for sure. How do you know how long she might have. She is in a facility but my brother lives near her so he has most of the responsibility unfortunately. I know I read that she can live quite a few years like this but in a way I hope not. It’s so hard to know that this once classy beautiful lady is leaving this world like this. Any insight on this would be appreciated. I don’t really get much information from my brother. I try to visit as much as I can. But all I get from him when he visits is that she’s alert. Sometimes interactive. Whatever that means. TIA

fmb

Welcome, @hiker88 , though I'm sorry you have the need to be here.

My DH is also in late Stage 7 and is in hospice care. Unfortunately, there is no way to determine how long a PWD will live in this state. Co-morbidities often make a difference in the rate of decline. My DH is dying of congestive heart failure, and that gives clearer markers of decline than having only ALZ would. There is one caregiver who posts here whose wife has been in Stage 7 for seven years, far longer than the usual estimates.

Is your mother in hospice care? Perhaps you can be given access to speak with her care team, assuming you have HIPAA permission. A good hospice nurse is not going to give a time estimate until it's clear that the patient is actively dying, but you may be able to get more information from them.

One thing I will say regarding your brother's brief updates, a lot of the time there really is nothing new to report. I see my DH 4-5 times a week, and other than a slow, gradual decline, often there is nothing new going on. I know it is extremely hard to watch a loved one deteriorate like this, but unfortunately the timing is not ours to know.

hiker88

Thank you for this information. No she is not in hospice. He doesn’t feel she is ready for hospice. My doctor, when he asked how my mom was, thinks she should be hospice. She is unable to do anything herself. And if no one visits sometimes they just leave. her lying in bed. I do know that she gets stomach upset a lot. I have read the “average” in stage 7 is about 1.5 to 2 years. And judging by her, I’d say she’s been in late stage for at least 2 years now. Sometimes it would be better for her to have a co morbidity so she wouldn’t have to suffer. I mean at some point there will come a time she won’t eat. And she has a DNR. It’s just a horrible disease. Again thank you for responding. It’s hard being away. Feels absolutely helpless.

fmb

Your brother may not think she is ready for hospice because he has some of the common misconceptions about hospice care. Or he is in denial about her advanced condition. Based on how you describe her condition, she would certainly qualify, especially if your doctor thinks so.

Hospice care is provided in the home or a long term care facility. Being in hospice care does not mean that she is on the brink of death, many patients are in hospice care for over a year. Hospice care does not hasten death, but helps relieve the pain and discomfort of the final months. Strong pain medications are used only when milder interventions are no longer working.

My DH lives in an ALF with enhanced services and has been in hospice care for almost a year now. It has been such a blessing for both of us. The nurse sees him twice a week, more if needed. On-call nurses are available 24/7 if needed. The bath aide comes 2-3 times a week and gives him bed baths and shaves him. The chaplain and social worker see him and stay in touch with me regularly. I attend a caregiver support group sponsored by this hospice. If DH has a health problem (UTI, for example), meds can be prescribed. He does not have to leave the facility. They have provided a Broda wheelchair, Hoyer lift, incontinence briefs, bed pads, wipes and skin creams, and more. Now that DH is nearing the end of his life, oxygen has been brought in for use as needed. They are also extra eyes and ears and supplement the care the ALF is able to provide. All of this is paid for by Medicare.

If you can talk with your brother, perhaps you can convince him to simply have her evaluated for hospice. Then a decision can be made based on their recommendation. There is no charge for this evaluation.

By the way, when you post in the future, you might want to post in the "Caring for a Parent" section. This section, "Caring Long Distance" does not get much traffic.

harshedbuzz

Hospice services can add an extra layer of attention and support in this situation, but it's possible the facility is offering your mom most everything hospice would. My aunt's MCF/SNF's care was so well managed that hospice didn't bring all that much to her situation. The MCF/SNF had affiliated doctors that came to her if the CNP or family deemed necessary. They had visiting clergy and staff continued with bathing etc. Her guardian did hire someone to feed her if the guardian couldn't be there at least one meal a day but that's not something hospice would do. They did bring in hospice the last weekend of her life but it didn't change much.

Dad died hours before he was scheduled to be evaluated by a hospice team. This is a regret for me as I think the support for my mom would have been helpful. She was and remains kind of clueless about hospice. Over the summer we redid her Advanced Directive, and she wanted to avoid hospice "because they don't let you eat". My mother is a college-educated woman; a lot of people have strange ideas about what hospice is and isn't. Mom had somehow made it to 82 without ever having to care for someone who was critically ill or dying and didn't understand what she was seeing. Since she'd recently moved to the area and was unchurched, I think spiritual services and a grief group would have been a huge benefit to her.

I've been on both sides of this as the person local to the individual who was dying and as the out-of-state DIL who came 2-3 times a year to allow the caregiving sibling and his wife/family a couple weeks to travel. It's not easy either way. When it was dad, I felt (knew) my decisions were being challenged by someone (dad's brother who actually lived closer to the MCF than I did— I did this on purpose, btw) who wasn't there very often. When I was the distant DIL, I felt like my BIL and his wife denied MIL (not dementia) some services (PT) that would have improved her quality of life. It was hard to bring up my ideas despite having had 100% responsibility for her for about 6 weeks a year as they were both medical people. I wonder if you could check in with staff once a week although their reports will probably be in line with your brother's.

I'm sorry. HB

hiker88

Thanks for this information. My brother is sort of controlling. He is executor of her estate as well as responsible for making all medical decisions. (POA). So I’m an afterthought really. I did try calling the facility but was sort of treated like I was not on the approved list to ask questions. It’s not ideal but I do get pictures of her once in awhile of how she is looking. It’d be nice to get a medical report once in awhile just to see how everything is with her. I’m sure he is doing what’s right for her. She never had any real medical issues prior to getting diagnosed. I used to think it was a blessing but now I don’t know. The thought of her going through this and then what her final days may be like is just so hard to take in. thanks again for the insights.

harshedbuzz

@hiker88 It's hard when distance interferes with seeing your LO as much as you'd like.

I am of the opinion that it's prudent for the person making the medical decisions to be geographically close enough to be able to meet an ambulance as it arrives at the local ER. MC and SNF residents are generally sent without a familiar caregiver so it is imperative that the decision maker can get to the hospital as quickly as the PWD.

IME, "shared" or "split" POA/guardianship duties seldom work well and serve only to alienate siblings. I'm sorry your brother's behavior feels controlling to you but that's kind of the role of POA. I have it for my mom as her surviving child; the weight of the responsibility is hard. When it was me "helping" mom make decisions kicking them around with other well-meaning relatives made me feel like I was on the defensive at all times. And TBH, after spending time with dad listening to conflicting opinions from his brother and mom's sister just added to the mental load.

It sounds as if your dear mom has progressed to a degree that her care would be more in the line of custodial rather than medical in nature, so there isn't much data available documenting "how she's doing" aside from more casual reports around eating and sleeping at a certain point.

I do hear you on the anguish of watching someone who was lovely, charming and beautifully put together be consumed by late-stage dementia. Dad was handsome in a young JFK sort of way. His grooming was immaculate; some days he'd shower 3 times— before work, after and after a round a of golf complete with costume changes. And we used to joke that his wardrobe was more extensive than mom's and my sister's and mine combined. LOL, this was a man who packed— and wore— not one, but 2, dinner jackets to camp for the summer. In the last stages of dementia he was so physically changed, it was difficult to determine his sex/gender by looking at him.

HB