Dealing with dementia in someone that is still cognizant enough to know she is 'forgetful'.

Brock do… so happy I found your post. Thank m in the exact same position however I had to move and quit my job to care for my mom. Her short term memory was going for the last few years. Then one Saturday she called and said she got lost coming out of the bathroom. I told my husband it’s time.. she can’t stay alone.,four days after I moved in she’d was hospitalized with a uti and pneumonia. She was sent home three weeks later with hospice. Now they think she has a compression fracture bc her bones are so brittle and she only weighs 74 pounds! After the uti her dementia hit worse. We can have a heart to heart talk but she remembers none of it. She will call me bc she has to use the bathroom.. she forgets she has already gone and insist and going again. This can go on for hours. I find myself getting so frustrated. Not with her but the dementia. I have to give meds every four hours, plus take care of her finances, the house etc. I’m tired to the point I can’t even think some days and I miss living in my house even though it’s only 15 minutes away. I hardly get out and pay sitters periodically when I have a drs appointment. I don’t even go home bc my break is about two hours and it just makes me more homesick to go there but I can’t stay. She begs me not to put her in a facility and I won’t even though they put my grandmother in one! O feel resentful when she says “I know what’s it’s like to care for someone with dementia” and I finally said “no you don’t! Did you have to leave your home, your dogs, quit a job you loved, were you still able to go on vacation?! I couldn’t help it… I was so angry! I feel such guilt about this. Of course she doesn’t remember the conversation so I guess that’s a blessing. She will ask the same question 8 to mascon 20 minutes… some days o get so frustrated that I just come upstairs and have a breakdown! I know I need help but she is hospice now and must have meds every four hours. I went to my grandsons graduation but got there late and saw him walk and had to leave right after they calked his name plus they had a lunch for him but I didn’t go bc my caregiver backed out! I’m a mix of anger, resentfulness and love for a woman that I do not know how I will live without! She is my best friend. As you can see this message is at 2:45 in the am…,I have to give meds soon! I want this to be over but don’t want to lose my mom either! This is experiences changing me, my personality, my view of the future…,I hate all of this but what can we all do? Just knowing someone is feeling like I do helps so much! Reading what others are going thru lets me know how m not alone! I’m an only child so there’s really no family to help out much. But have a son but he has a family and it tears him uprose his granny like this so he makes very short visits bunches can’t handle it all! I get it! To beat it all I worked as a caregiver for the last 13 years on and offering my last four clients being hospice. Be wld think that I had all the answers but find it’s hard being on this side of the coin. I guess for now all I can do is my best but feel like I’m failing every day. When I was working I always got compliments from families for how I handled their loved ones at the end but here it is my own mother and I’m totally lost! It’s like I’m losing a part of her every day and I hate waking up some mornings. I’m trying hard to embrace this time I have with her and know this is just a chapter in my life.. not the whole book! My thoughts and prayers are with you and your family… it’s not easy I know!

Get help so you have some time for yourself. This can help you have a better attitude about caring for somebody that needs a lot of time and hands-on care.

Learn all you can about her dementia and stroke. Find out what her limits are and the most likely path her dementia journey will take in her life.

Help her focus on what she still can do. It is frustrating to know all the things that were once easy and now are difficult or impossible. Focusing and doing what is still an ability helps to stave off depression.

How do you watch a loved one slowly slip away? - Sadly, respectfully and remembering it all times that this is not what she would have wanted for herself.

It is so difficult to have your life and feel guilty if you don’t help Mom. I am in same spot. We lost Dad several months ago and we were able to let him go to Heaven from his chair in his home. I just refuse to put her in a home. It would just kill her. I pray every night that God takes her before I have to decide on that. But… there are services available that would provide someone to take a few hours a week to be there for Mom. Meal delivery so she only uses microwave. It is so hard to see Mom decline. Know you are not alone. Take advantage if anyone offers help. Let them stay a bit. let them fix a meal or read to Mom. It is so hard. Keep faith and try to take care of you. Counseling has helped me. Plus it gives me an hour for me. Bless you for caring for your Mom

I have this same situation with my Dad. I moved him to AL near me in October. I also have my mother at my house. She is bedridden and her dementia and hearing loss has progressed enough that she can’t really converse in any meaningful way except on rare occasions of lucidity. But she knows who we are.
I understand how you feel. My Dad knows his memory is bad. He does struggle with the TV and telephone. He asks the same questions repeatedly. I think the only thing you can do is dig deep to find whatever compassion and empathy you have and forgive yourself for times when those human compensators run low. Get some space when you can. Cry or scream or journal or do whatever healthy thing helps. Unfortunately, this is out of our and their control. Time for acceptance.

You are not alone. My mother tells me everyday that she's forgetful because she's old. She will not accept the Alzheimer's diagnosis. She forgets she has a mobile phone so she won't call when she needs something. She has forgotten how to use the TV remote, so she watches the same station all day. After she forgot how to put gas in her car, I had to put her in assisted living. It's still hard to speak with her because she's sure there's really nothing wrong other than old age. So she's convinced she'll be going back home soon.

2 situations: my MIL is what you described and we got her a housekeeper, driver and assistant 5 days a week. That was great but my MIL is not a compassionate person and resented having someone around her every day. 3 people later (she ran them off), we have decided to just go with the housekeeper of 2 days a week and appointments are made on those days, so the housekeeper is more changing beds. My MIL is working like crazy every day with the swiffer. Good hobby to have! 2nd situation. My mom declined to the point she cannot live in her home even with care. If you place her in a place, make sure you can have cameras in the room and that you can get her a “friend”. MC is lonely because the only ones able to talk to you are the staff and they are busy. AL is okay but can be cliquish.

I agree with many here. Mostly about the " Grieving". My mother had fallen and fractured an ankle, then fallen and broke her hip. Then suffered an aeortic ruptured aneurysm, all in a years duration. She had lived alone for 21 years. After the aneurysm, when she went home, suddenly NOTHING in the house worked. She was calling me constantly. One posted answer mentioned they're loved one had suffered a medical situation that exasperated the Dementia. "Yes, after my mothers hip break? I was amazed at the extent of how bad her memory and inability to comprehend, and so suddenly...( phone, tv remote, even toilet handle) My mother was never diagnosed as I was always told " She has got to agree to be diagnosed" ( what the $^*@! Sense does that make if they insist they DONT have Dementia??) At any rate..my mother is now in adult family home. Talks bout goin home, but shes a major fall risk and cant walk without a walker, person behind w a gait belt and wheelchair..I've had many a conversation that I can compare to " Whose on first?".. over many simple things , tv remote, toilet, stove, even toilet handle. . I have sold her hovel of a broken down dirty and unsafe trailer and have the money set up for prepaid final arrangements. My therapist did indeed said " not GUILT I'm feeling but Grief".. she was not much of a mother to me while growing up. Siblings adopted out. Fosterhomes, etc. I'm the oldest of 5. 65 years old now and since Dec.of 2023 I have been absorbed in this situation with my mother, and I'll see it to the end, regardless...yes, you've got this..

Time to look into full time care
options
you can’t be around all of the time
speak to care/doctor
They are used to these things and can help steer you into best option for your mother - and you.
Watching someone you love deteriorate is devastating
maybe speak to your doctor about counselling
—
on another subject - medication and water
my father went thru a bad stage after being in hospital
we thought it was Alzheimer’s or something
we got him to my house and took him off the pain killing tablets that break suns to morphine
has him drink more
And watched his eating and all of the symptoms disappeared!
so maybe have a review of the medication and how much water mother is drinking
dehydration can exaggerate symptoms!
they can do tests on water levels
good luck

Unfortunately, there isn't a nice way of saying this. You either have a heart and compassion for the loved one in your life to take care of them until the end or you give the responsibility to someone else. There are sacrifices with time to care for them. Sometimes we lose our freedom for a little while to caretaking, but that is a part of growing older and become selfless not selfish.

Feel my arms around you holding close patting your back as I whisper in your ear "you got this". You've never done this and hopefully you'll never have to do it again. You do not want the feelings of resentment but more than that no guilty feelings. Put your life on the back burner because it's all about your mom's quality of life in her final chapter. It's your job to help her in every way every day and not make her feel like she is a burden. Patience is top priority. Show no aggravation or aggression. Stop and think what if this was me and treat her accordingly. This will be over quicker than you could ever imagine. Meanwhile a routine helps. Making light of situations help. I would say... Oh well don't worry you'll remember it later it will come to you and tell me when you remember. And if you slip out and recognize you slipped back in tell me that too. Dedicate all your time to enjoying this time with your mom. She earned it.

This part of the journey is very hard, both for you and for her. Every day, just try your hardest and best to be a loving and disciplined daughter and care giver. Start to establish routines like exercise, bathing and grooming habits and timeliness of meals. As her dementia progresses, this might be the only activities that you will be able to do with her and she will specifically recognize you because of them.

At this stage, your Mom knows enough not to trust her brain. On the other hand, she doesn't know what she can't remember....and each day is a new day with so much effort in trying to figure out what she knows/doesn't know/whether to ask for help, etc. Very tough times for both you and her....until you and she get to "new normal".

What initially helped my Mom and I, was to enroll her in senior day care. There, she could observe and laugh and chuckle over the behavior of others, the politics between the staff, however, also take naps whoever she wanted, in a safe and supportive environment. Think of it as an 8-10 hour movie.

She would come home and talk about what happened, what activities they did and what they had for lunch and snack. Because she was a fall risk, I paid extra to have an extra attentive staff member be at her side whenever she started getting out of her chair. She loved all the extra attention.

If it was a 3 day holiday, we had a difficult time with her as her normal day meant being in the front row, watching other people.

At night, because she was a fall risk, we hired caregivers from an agency for 9 hours....enough time for me to return home, sleep and get back up the next morning. We had a very tough time keeping caregivers as my Mom was very active at night, getting in and out of bed, then going to the kitchen and eating, etc.

We covered the remotes to only allow her to press the few channels to the television. However, that eventually became too much and she could no longer follow the TV plotlines, then she could not follow the conversation and then she could no longer read the closed caption. She couldn't use the phone as it took too much energy to listen and respond to conversation. If the phone conversation sounded important, she automatically would give the phone to me to deal with. I attribute someone being with her 24 hours a day as the reason why she didn't fall for grandparent, text, or email scams.

She was very much attached to routine...ironically, we could do exercises with her, however, it progressed to not being able to clean her teeth properly, nor could she wash herself. In fact, in the last stages of dementia, she remembered enough to allow me to brush her teeth and for her to do her exercises. It was our special time together.

Your question is: how do you watch a loved one slowly slip away? I had the honor of being with her every day. Every day, I gauged what she could do and what she couldn't do, what she remembered and what she did not. I had a therapist who checked in with me once a week (they found me, not the other way around) who helped me figure out ways to communicate with my Mom, how to control my frustration, how to cherish those times when good things happened.

I luckily had siblings who tolerated my concerns and helped me through many issues. Based on what they heard, they helped plan and prepare for the time when I might not be able to deal with what happened if my Mom stayed at home. I did take "vacations", however, most were cut short because of some "emergency" or another.

So how does one watch someone slowly slip away? With a lot of help and ideas from other people.

I feel for you! Watching your loved one disappear and change into someone you no longer recognize is so hard! You have to allow yourself to mourn, and have some grief for the person who no longer is here.

For her, you can just continue to be her constant, her link to reality, even when it confuses her. And don't bother arguing with her about what is right, as she won't understand. Just try and follow along with her on her journey into the unknown.

If she has the means, find a caregiver companion to spend a few days a week with her, to give you a break. You still have a life to live, and you are not betraying your mother by living our life and taking care of yourself.

My heart goes out to you.
I've worked with people in the beginning stages who know that have dementia. It is a very cruel disease / condition.

You must learn to set limits / boundaries with your time and what you will do.
You may need to hire caregivers.
No one can run on empty.
You need to renew yourself for 'the next day'

If she is living alone, she should not be. She is unable to care for herself.
You need to get MD documentation -
Are you handling legal matters? You have to take over now.

You do not tell her not to call; you see if you can put a block on your phone - for specific times of day or how many calls (I don't know what's possible).
- You may need to turn your phone off. "Try" telling her to call you 'only' 8am-3pm or set some structure. She likely won't be able to abide / remember, however you must start settling boundaries.

If you do not set boundaries with your time and what you do, you will not be able to function 'well' and certainly not care for her as she needs. You need to renew yourself and not allow yourself to burn-out.

You need to know that you DESERVE a life ... and I realize this is a very sensitive and difficult place for you to be with your mother.

My heart aches reading "How do you watch a loved one slowly slip away?'
While I haven't experienced this to the degree you have (and not my own mother), I sense that getting a therapist now will help you process through all this. You are in a GRIEVING situation. And, the worst kind of grieving - in slow motion. Take care of yourself anyway you can.

You can try hiring college students (majors: nursing, geriatrics, psychology, health). Or if you have the funds, hire experienced care providers or through an agency. It may be time to place your mother in a facility.

I highly recommend that you DO NOT allow her to move in with you.
You won't have any boundaries nor a life and you'll fall apart - doing too much, or wanting to do too much. (I am very aware of boundary setting ... and I had a very hard time with my responsibilities - and this was a companion/friend of 18 years. You do what you can ... take breaks ... get volunteers ... call your (or a) church for help ...

I'd advice that you watch TEEPA SNOW's webinars. I took them for 1-1/2 years or so. Buy her books, watch her You Tubes.

Call a local dementia association for support and see if they have support groups. Get all the support and physical assistance (caregivers) you can.

Get this book:
The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss - Johns Hopkins Press Health Book
... After 35 years, still the indispensable guide for countless families and professionals caring for someone with dementia.

Whether a person has Alzheimer disease or another form of dementia, he or she will face a host of problems. The 36-Hour Day will help family members and caregivers address these challenges and simultaneously cope with their own emotions and needs.

Featuring useful takeaway messages and informed by recent research into the causes of and the search for therapies to prevent or cure dementia, this edition includes new info on:

• devices to make life simpler and safer for people who have dementia
• strategies for delaying behavioral and neuropsychiatric symptoms
• changes in Medicare and other health care insurance laws
• palliative care, hospice care, durable power of attorney, and guardianship
• dementia due to traumatic brain injury
• choosing a residential care facility
• support groups for caregivers, friends, and family members

Gena / Touch Matters

This certainly happened with my brother who was in a car accident, lay in the arms of a neighbor saying "I KNEW something was wrong" and indeed it was. He had probable early Lewy's Dementia diagnosed by his symptoms. He and I discussed it and planned and worked together to make him safe. He appointed me his POA and Trustee of Trust, we sold his last small home and he chose an ALF. It took us a year. I lived at one end of the state and he at the other. There was no question of my being there physically for him and his remaining home, and in truth that was A GOOD THING.

You and your mom can now discuss as my brother and I did, the past, the present and the future, and get her situated and safe. What you must NOT do is take this onto yourself. This is a downward trajectory you cannot manage and to try to do so is a mistake, and it's a greater mistake to let your mother think that you can.

You have a time in which you can work together now. First step is off to the attorney to make certain wills, POA is all done. Take over the bill paying for her. Look on this as a good thing; you have time, can talk and be honest with one another. I am VERY THANKFUL my brother and I were forwarned and went right to work to get him situated safely.

There are people with dementia who know "something's not right" with them, and then there's those who think nothing at all is wrong with them, in spite of ample evidence.

I'm so sorry you and your Mom are going through this. If your Mom isn't on medication for anxiety and depression I would start having that conversation with her primary doctor now. Dementia robs people of their ability to regulate their minds and emotions and depression/anxiety is extremely common problem for them -- and one for which there is treatment, which is medication.

My 96-yr old Mom (who lives next door to me) has moderate dementia. She's had short-term memory loss (but not all the time), and judgment failures (but not all the time) and paranoia (but not every week). She started to cry in the morning "for no reason" so she asked to be put on meds for that. If you knew my Mom -- a Nurse Ratchet old-school RN who hated taking medicine for anything -- this shocked me a lot. BUT her very wonderful primary doc (a senior woman herself) put her on the lowest dose of Lexapro and my Mom hasn't cried since and is generally more light-hearted.

It absolutely takes practice to not react to them as if they are their old selves and in control of their words and actions. Every day I have to walk out of her house as she's fretting over nothing or going on about some negative topic.

Your Mom asking for your help all the time may be Shadowing, which is a common dementia behavior. Please educate yourself about dementia. You'll also learn strategies to deal with the most stressful types of behaviors. I learned a lot from Teepa Snow videos on YouTube.

Also, consider throwing out all your Mom's cloth undies and replace them with disposables. This may or may not stop her from packing the tissue in there, but maybe.

Most important is for you to make yourself and your life a priority. You need to do self-care and self-love every day, religiously, or you will burn out. Your Mom wouldn't want you to burn out on her behalf. If you burn out you can't help her.

I wish you both peace in your hearts on this journey and wisdom in making future care decisions for her.

They don't call it the long goodbye for nothing.
You need to bring in care so you are not "on" 24/7, and I also recommend respite days when you can get completely away to do your thing without needing to even think about her needs - the earlier you start this the easier it will be for both of you to accept having outsiders as part of the care team. An adult day care might be a good starting point. Many, many people give care in the home, there's no need for a facility at this point but it's up to you to have a clear plan B in place and to know your limits.

Hi Brockdo,

Try not to be consumed by your mum's feelings about recognising that she isn't quite right. You have enough of your own sad feelings about the situation without taking on your mum's as well.

I agree with Fawnby that you should look into a more appropriate setting for your mum. And fast. If she can't use basic items, like remote controls, she also can't look after herself.

Your mum will need round the clock care, and that can't be you. You are already finding this situation difficult, so don't take on any more responsibility.

Instead, be your mum's loving daughter and advocate. Believe me, that will give you more than enough hassle and heartache. You don't need to be another burnout victim.

Wishing you and your mum strength and peace in this challenging time.

Start investigating facility care for her. She’d have a 24/7 team to look after her; friends, activities, meals, snacks, transportation. The situation you describe isn’t sustainable, and you’re already feeling the strain.

Imagine what your life will be like when she is incontinent, can no longer walk or feed herself, cannot speak understandably, and thinks you’re stealing from her. Better to start making a plan now rather than waiting.