Mom is declining, what should I be doing?

Wow! You have some really good advice here! As you say, this website is very helpful. I will add a few ideas from caring for my wife, age 83, now 10 years into Alzheimer's and confined to bed at home for the last 22 months:

1. Yes, food and drink is important. I find it best for my wife to drink between meals both morning and evening. Coconut water (also with 1/3rd Kefir) works well. It tastes good and has a lot of nutrients. You need a lot of vegetables, but also a desert with sesame seed cakes and yoghurt works well, so the bowels are not too loose.

2, Urinary tract infections are a real danger, especially with women, as they happen so easily. Caregivers often will not be so intrusive, but it is not difficult to clean out any feces that has got into the vagina with FemFresh or a ph-based tissue. Also, if you can get a urine specimen in a tube (just get a tray that fits under the toilet seat and the person giving the specimen may not even notice) then you can tell yourself if there is a urinary infection. Hold the tube up to a light. If it is cloudy, there is an infection. Get appropriate medicine from the doctor for the time specified. Then get another urine specimen; hold up to the light again; if it is clear, the infection is gone! If not, get immediate medical advice.

3. End of life is defined as someone who may die in the next few weeks or months, but could live for years. You have a good recommendation on a website that sets out a pattern of how it can happen.

4. Try to listen and communicate as much as possible. People with advanced dementia are time travellers who experience the past as a living reality. Accept it; and communicate with them where they are, This can be called "therapeutic lieing" but it is really much more empathy grounded in careful listening.

5. Sleeping a lot is not necessarily a sign of decline and imminent death. There is scientific research that shows that plenty of sleep reduces the effects of the amyloid plaques and Tau-based tangles in the brain. They are not removed, but I find that although my wife has slept 16 to 18 hours out of 24 for more than a year (12 to 13 at night with morning and afternoon naps as well) she is still in good spirits and often quite profound in her insights and ability to relate to others.

We are all unique human beings. You need to find the path that works best for both of you. I think you are doing well--alert, seeking best solutions, being proactive but not alarmist.

Prayers and hope for the future,

Dear Momsonlychild,
My mom's eating/drinking habits have changed in the past year or so and she started sleeping more since last winter. It doesn't necessarily have to mean that the end is imminent. Heart rates are usually 60-100 for an elderly person so your mom is fine there. Oxygen level of 93 is still fine but, they like to see it around a minimum of 95 or higher but, her blood pressure is low. Elderly people in general may experience a lack of desire to eat because things just don't "taste" good anymore as their senses diminish. Also, elderly people often don't drink enough water. A lack of proper hydration can cause confusion. People sometimes forget that the brain is an organ and like the rest of the organs in our bodies it needs water. The brain is made of approximately 75% water so they consider a 2% decrease in water intake to have a negative affect in brain function. Dehydration often causes UTI's which causes confusion as well. In my mom's case she was sleeping more because she wasn't sleeping well at night. So as you can see there are so many things that could be going on. As for the bad headaches and breathing changes, that is harder to pinpoint. It is good that you've quit forcing her to eat and drink. I don't force my mom to eat or drink either. I just suggest it and provide a few soft foods that she does like such as her favorite ice cream, protein shakes, rice pudding along with bottled water and put it in her fridge at the AL facility to have on hand. My mom is 95 with Alzheimer's. She was completely mobile, able to dress herself, used a walker I bought her just to help prevent falls right up until COVID-19 came along. She became severely dehydrated, contracted COVID, had bi-lateral pneumonia and a severe UTI. Once released from the hospital and placed in a rehab facility, she was no longer able to walk and couldn't get out of her bed without assistance. She wasn't eating much so once again, I provided those foods and a V8 Energy + drink. So even though those items aren't of great nutritional value, they did provide calories and kept her alive. After rehab, we moved her to a new facility (as I felt her AL facility was negligent) and placed her in memory care where she would have more care. Also, she was now eligible for hospice. I had hospice when my dad was dying back in 2004. I cannot tell you how beneficial they are. They realized after a couple of falls during the night, that my mom was not sleeping well so they put her on a very low dose anti-anxiety medication to take the edge off her agitation and now she is sleeping much better and hasn't fallen in the middle of the night. She still has had a few more falls during the day but, they now have a "fall mat" placed beside her bed. They take care of not only my mom's needs but, are there for me - her only child. The nurse sees her once a week, the bathing team goes there twice a week and a social worker calls me every other week to see how I'm doing. Chaplains are also available to both of us. If you ever have any questions or concerns, they can take a call 24/7. I think hospice would be so beneficial for you and your mom. I think it would give you some relief, peace of mind and you wouldn't feel so uncertain about what you should be doing for her because they would provide you with guidance. I hope this helps give you some direction. Take care and let us know how things are going when you can.

Here is an end of life timeline of what you may expect:


Timeline for end-of-life changes:
One to Three Months
    • Decreased desire for food
    • Increased desire for sleep
    • Withdrawal from people and the environment

One to Two Weeks
   • Even more sleep
   • Confusion
   • Restlessness
   • Vision-like experiences
   • Change in temperature, respiration, pulse, and blood pressure
   • Congestion
   • Not eating

Days or Hours
   • Surge of energy
   • Decreased blood pressure
   • Glassy, teary eyes
   • Half-opened eyes
   • Irregular breathing
   • Increased restlessness
   • Cold, purple, blotchy feet and hands
   • Weak pulse
   • Decreased urine output

Minutes
   • Gasping breathing
   • No awakening

This website:
https://www.crossroadshospice.com/hospice-caregiver-support/end-of-life-signs/
is one of the most comprehensive hospice directed end-of-life and what to expect discussions I've ever read. Take a look at it; it will help you understand the transition process it its entirety, and to take the fear out of the equation as well.

Best of luck with all of this........I know how tough it all is. Sending you a hug and a prayer for peace

Thanks everyone. Sending a message to Hospice now. Mom’s on their Dementia & Pallative Care.

If you have not had her evaluated for hospice, do it now. They will be support for mom and YOU as you travel this journey.

If she is already on hospice call them.

One word here...hospice. Get her evaluated and they can tell you as well as help her when it’s time to transition. They also can give you support.

Glad took the words out of my mouth; call hospice.

My mother is on hospice for congestive heart failure and also a low battery in her pace maker. Her b/p is around 88/53 most days. It can go lower. She has a difficult time getting going in the morning and sleeps a lot during the day. She is a fall risk. She has been like this for a while. I can’t say she is nearing the end however unless there is a drastic turn for the worst. She keeps recertifying for hospice every 3 months due to her b/p and failing pace maker. Days are hard for her. Eating can be good some days, and almost anorexic on other days. I am thinking she may be better off at the hospice facility where she will get more care.

Evaluating her for Hospice May accomplish this but have you consulted her doctor just to make sure there isn’t some other resolvable underlying issue going on, UTI or some other low grade infection for instance? I would also add that Nobodygetsit has a very good point about water, it’s hard to stay properly hydrated when you aren’t active or thirsty and when you add the effort it takes for some to get up and use the bathroom or worse need to be changed it’s no wonder dehydration is such a common problem as we age. Dehydration can cause or exacerbate both low blood pressure and headaches in addition to the others NobodyGetsIt covered.

Consult her doctor and get the real lowdown on your mother. As another person said, you may need hospice to check in on her. They know when end of life approaches. That is their wheelhouse. She has lived a very long life and if she has dementia, she can’t tell you some things about how she feels. Bless you and your mother.