Mom is declining, what should I be doing?

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.

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.

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

I keep reading that if she’s still walking some and talking some she’s not end stage. But it sure seems like it. Any experience like this?

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

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.

You should ask the doctor to put her on a medication that increase the appetite. My mom was going through the same thing. Her doctor put her on meds that increased the appetite. She is now eating like a horse. Also look into giving her insure it helps.

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.

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,

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.

Please have a check up with her doctor to check for infections as well as possibility of impending stroke (bad headaches). With the summer high temps and humidity, it is hard to stay cool enough and hydrated enough. Offer popsicles and jello to get a little more fluids in. Her O2 is low as is her BP, but not dangerously so. Keep offering "nutritious snacks" and fluids in effort to increase her bp and maybe help the headache.

Many older folks at end of life eat little and don't drink much as well. Sleeping more is expected. Confusion is usually a result of low bp, electrolyte imbalance, or brain damage from stroke.

As I don't profess to be a medical professional, I believe that your mother should be seen by her physician.

hospice care is critical just went through this with my wife who is now departed

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.

I would say the answer is yes, those symptoms, particularly with declining appetite and thirst, and others you mention commonly indicate nearing the end of life. There are lots of things to pay attention to, some mentioned here. As much calories and liquid as possible...and attention and response to symptoms. You would need someone with at least a CNA certificate, and other medical training, to do this all properly. Trained caregivers have all sorts of ideas on the various drink products, boosts, ensures, pedialite, to address some of what you say, UTI, pain treatment, memory care, companionship, limited exercise, and so forth, to make this stage of life as comfortable as possible, lessen anxiety, and perhaps extend life somewhat. The low oxygen for example, might indicate the need of an oxygen generator, which could be provided by hospice. Low oxygen can be, probably is, uncomfortable for your mom. Just noting it and asking here on this website probably isn't sufficient. Your mom needs to be seen and monitored regularly by a doctor for this and other symptoms . Your mom’s remaining life timeframe is variable, hard to specify, but a typical range from what you say...3-15 months...it would appear it is her time.

And another issue with this forum is that you get opposing answers...like gladimhere saying the body doesn't need or want nutrition or even painful. That's wrong, perhaps with the exception of iminent death (last days), and even then, small amounts of liquid nutrition are offered. The body requires food and drink, and lack of such will hasten decline. In any case, the point is not to debate, but to bring this (hardly drinking or eating at all) to the attention of a doctor/medical professionals for treatment. I hope we can all agree on that here.

Having been there, I can speak freely. Accept what is - we can't change it. Love her and be with her to the best of your ability. My prayers are with you.

What is her overall condition? Advanced dementia?

Has she been seen by her doctor? Has she been tested for a UTI?

If she is near the end, I agree with not forcing her to do anything but to keep her comfortable as your main goal.