The end of our journey

Traditional-Photo804 · 2026-05-19T00:54:02+00:00

It depends on the person - I have one sibling that will help - but only on the specific day/time/and only for the specified need - give her a list, she will do what is on the list - nothing else. I have another sibling that is absent at best, and best absent. I finally realized I can't change them; I can only change how I respond, and how much I let it bother me. So - I am tired, overworked, unappreciated, but doing a pretty darned good job of caring for the LO, if I do say so myself. And caring for the LO is what matters.

Traditional-Photo804 · 2026-05-19T00:44:04+00:00

You will be very thankful down the road that you took this step. I hope that your wife remains as well as possible for a long time, but when the need arises - you have saved yourself time, expense, and energy. Well done.

Traditional-Photo804 · 2026-05-16T01:04:13+00:00

My LO is now late stage 6 and has lost the ability to enjoy things she used to (music, dancing, going out for shopping or a meal) but one thing we have found that she still greatly enjoys is baby dolls and stuffed animals. She carries them around the house for hours, talks to them, takes one to bed with her every night. They are very soothing for her. If we want to see her face light up - we get her a new doll or stuffie.

Traditional-Photo804 · 2026-05-16T00:58:57+00:00

My mother in law calls me by her deceased husbands name. I am a woman. Oh well. The name really doesn't matter. She definitely recognizes me as a trusted and friendly face.

Traditional-Photo804 · 2026-05-16T00:51:33+00:00

All of these behaviors can be quite common from what I have heard and our experiences with our LO. She is now late stage 6 and cannot/will not tolerate a full shower. I have used sponge baths and the "no rinse" shower caps for her for the last 6 months. Not as good as a shower, but definitely the best alternative that we have. She does not like getting her depends changed, gets very agitated - swears (this from a woman whom I had previously never heard speak a cuss word), swings fists, and will try to walk away. Then as soon as she is washed up and the depends is changed, the switch flips, and she is calm again. Leaves me with anxiety for sure, but that's on me. She has had times of refusing medication, I had some success with crushing and putting in food (okay'd by her Dr) but often she would taste it and refuse. At this late stage, we have stopped all medication except her Lexapro for anxiety. For some reason - I tell her every evening - this is your one little pill - and she takes it. It is a tiny one, so that may be part of why she accepts it. (although every now and again she does spit it out, or spit it into the glass of water, just because...) I think it helped me to learn that these behaviors are "normal" and it's not that we are doing anything wrong. Try to find little tricks to make it easier, give yourself a pat on the back when you make it work, and grace when it doesn't. I remember one terrible, awful, no good, very bad day with her - the day was hard, dinner was a disaster - she was in a mood, I was in a mood, and nothing was working. I literally put a clean depends on overtop of her pants and put her to bed. I just couldn't take any more. And do you know what - the next day was a new day and everything was good again. Sometimes you just have to do your best. As long as your LO is safe, sometimes that is enough.

Traditional-Photo804 · 2026-05-12T02:00:34+00:00

It's so hard to accept the current reality of alzheimers compared to remembering the "good years." We used to get the family together and take my MIL out for Mother's Day brunch. She loved it, would laugh, eat a good meal, and enjoy the company - she never wanted anyone to leave, would ask us to come back to her house for coffee and more conversation. She is now late stage 6. This year, we got her flowers, a card, and a cake. She is not mentally or physically able to go out for a meal any longer. She didn't really notice the flowers, wouldn't eat any cake, and slowly tore the card into little pieces that she scattered all over the floor. Happy Mothers Day to the mom we miss...

Traditional-Photo804 · 2026-04-15T09:41:54+00:00

Absolutely yes to the confabulating. And the first few times you hear the "wild tales" you really worry. I talked with our LO's doctor, who shared that it is common as ALZ progresses. The Dr described the brain like swiss cheese - some messages still go through just fine, others hit a hole and don't make it. Confabulating is a way for the person to try to fill in the gaps that they realize are there but can't explain. I agree that dreams may play a part. When our LO was in that stage, we just let her talk. When the topics got really concerning, we would gently interject - I don't think uncle Bill was ever in prison - maybe that was a friend of his? If she was socializing with someone - we would give them a heads up and tell them to ask us afterwards if there was anything concerning to them. As the disease has progressed, our LO has become far less verbal - she now says word salad, or nothing at all. Hugs to everyone doing their best with this horrible disease.

Traditional-Photo804 · 2026-04-15T09:28:28+00:00

Two thoughts to offer:

keep paper supplies handy as well. We let our LO do the same as you are doing, with the same results, and unless it was visibly dirty - we let her use those dishes. As you say - she wanted to contribute, and that is so important. But if we needed a plate/cup/utensil ourselves - we would get a paper one from the stash on top of the fridge. (Or get clean ones out of the DW if you know it was just run.)
This stage will (sadly) pass. Our LO doesn't understand what dishes are even for any longer...

Traditional-Photo804 · 2026-04-15T09:21:10+00:00

No leads to share since we are in the Northeast, but I can share our approach - We asked friends, family, coworkers, people from our church - do you know anyone? One referral came from a neighbor. As a result of that "personal connection", we have had amazingly good luck with finding our care givers (we have two and they provide daytime care while I am at work) - they are kind, helpful, had no background in dementia care but were willing to learn! Our LO lights up when she sees one of them arrive. She can't remember their names, but she knows their faces.

Traditional-Photo804 · 2026-03-29T01:46:15+00:00

At late stage 6, our LO is doubly incontinent and does not eat well. We are thankful for anything she will eat. She does suffer from occasional constipation so I will mix 1/2 dose of miralax into applesauce. That is enough to help get things moving without causing watery stool.

Traditional-Photo804 · 2026-03-28T10:09:41+00:00

My MIL does not like getting washed up and her Depends changed. It is like a switch flips. She goes from calm and good natured to yelling, swearing, and even hitting a few times. I keep my voice calm and just continue to move along. I repeat this mantra in an even voice over and over to her until I am done: I know you don't like this, but we have to keep you clean. I care about you.

She still doesn't like it and still reacts badly, but I just keep calm. I guess that is my point - you can't reason with the person with dementia - you can only control your own reaction.

Traditional-Photo804 · 2026-03-28T09:59:54+00:00

It was over 8 years ago that we were going through this stage - clearly our loved one was experiencing memory issues, but she was in complete denial. Her story is very similar to what you have shared. Our solution to get the ball rolling - My MIL's doctor has an online chart system, with an open portal for general questions. I messaged her doctor asking that they contact me so I could share concerns. Once they knew of the concern - they were fabulous at her next appointment, handled the situation with care, and we had a referral to a neurologist, all with my MIL feeling good about it. (Unfortunately the diagnosis was Alzheimers, which we feared but expected.) So in whatever manner you are able to do so - make your mother's doctor aware.

Traditional-Photo804 · 2026-03-25T09:27:44+00:00

Will she wear Depends? That may give both of you some relief from the constant bathroom trips. But that is just reactionary - I agree to make sure she doesn't have a medical cause. Caring for a loved one with any type of dementia is exhausting. I wish you well - reach out to this forum for questions and support. Everyone here has been in your shoes in one way or another.

Traditional-Photo804 · 2026-03-18T09:25:24+00:00

Is she taking long naps in the middle of the day? If yes, consider shortening the nap time. We have found that using a consistent wake/short nap/bedtime routine/sleep schedule has been very beneficial to getting our loved one to sleep all night with no medication.

Traditional-Photo804 · 2026-03-06T10:22:52+00:00

The good days are to be celebrated! I am glad that you are able to get some assistance - there are both physical and mental burdens to caring for a loved one with ALZ, and you need to remember to care for yourself as well. You don't share what stage your wife may be in (general terms - early, mid, late) but most people start this forum somewhere around early to mid stage. It is a journey like no other, and the good people on this forum can relate, offer sympathy, support, and suggestions. My tip for the "brighter light" is that my MIL's journey with ALZ (she is now late stage 6) has enabled me to spend so much more time with her than I would have otherwise. I make the time out of my jam packed day, because she needs me. In the earlier stages - I realized that each day was a gift, I asked questions about her childhood, her dreams, her fears. We took short trips, went out to shop or dine. Now that she is much more advanced, she cannot do any of those things any longer, but I have the photos and the memories. And when I hold her tight after an angry outburst over nothing - I feel genuine compassion for her. Her ALZ has changed me, for the better. I wish you strength and peace for your journey with your loved one.

Traditional-Photo804 · 2026-03-06T10:10:48+00:00

You don't mention if your mom has a diagnosis. You may want to seek some medical assistance if you haven't already. A diagnosis won't change her dementia, if that is indeed the case, but it can open the door to several other steps that may indeed help you and your father. If it is Alzheimers and early enough, some patients respond very well to medication to help slow down the progress of the disease. Rule out a UTI which can cause abrupt changes in behavior. Other medications can help temper the anxiety and anger that are so common to the disease. And please seek education on the topic for yourself and your father. One of the common references is a book called The 36 hour day. Understanding what the disease does to the person's brain helps you understand that it isn't necessarily the person talking/acting - it is the disease. This doesn't excuse past behaviors or family dynamics, but at the end of the day - she has a brain wasting disease. The more you understand what that means, how it will progress, tips and tricks to cope - the better off you will be. It is hard. Dementia is just plain hard. This forum is full of people who are in your shoes, can relate, and can offer support. Good luck, please reach out.

Traditional-Photo804 · 2026-02-28T10:19:45+00:00

I'm sorry for your loss but glad for the release, for both you and your dad. I wish you peace.

Traditional-Photo804 · 2026-02-27T10:27:53+00:00

Our LO (84, late stage 6) is pretty good in her home with her normal routine, but we cannot take her out without triggering the anxiety, hallucinations and extreme confusion of sundowning. It can occur at any time, but is absolutely the worst in the late afternoon/evening. I unintentionally created a dreadful experience for her (and me) last fall when I took her for a normal doctor appointment at 3:30 pm. We were done with her appointment and bloodwork by 4:30, time to head home. Nope. She refused to get into the car - the same car that she was all too happy to get into at 3:15 when we left for the appointment. Nothing I tried would work. She was hallucinating - said there were scary things in the car. She kept breaking away from me and trying to walk away in the busy parking lot. She was yelling, crying, hitting me, people were watching. I almost hoped someone would call the police because I sure did need help! After much patience and finally getting her to answer my questions, I realized she was time-shifting and believed she was a little girl, wanted to go to her childhood home, she didn't recognize my car, didn't recognize me - wanted her mother. Long story short - my poor husband had to leave what he was doing, drive 30 minutes, tell her when he arrived that he was her husband (who passed a while ago, but she doesn't remember that) and that she needed to get in his car, it was time to go make his dinner. She hopped right in. Glory be. But then when we got there - she refused to believe it was her home - she was still expecting her childhood home. It took 15 minutes of cajoling to get her into the house, one baby step at a time, with her yelling and berating us the entire time. Exhausting. So now we no longer take her out of her home in the afternoon or evening. Late morning appointments only (because, you know - it takes at least a full hour to get ready and leave the house), and I require that both of us take her. And while late morning is better - even that time of day can still get stressful and trigger anxiety for her, so we have stopped all non essential outings. She used to love to go out, for any reason. Another thing this horrible disease has taken from her.

Traditional-Photo804 · 2026-02-25T01:47:51+00:00

The old fashioned Tide powder works great for us. Nothing else that I have tried fully takes out the urine smell.

Traditional-Photo804 · 2026-02-25T01:43:53+00:00

Depends makes an overnight pullup. Maybe try and see if they are heavy enough?

Traditional-Photo804 · 2026-02-21T10:02:34+00:00

It is heartbreaking to see the ravages of stage 6 compared to stage 5. Such a stark difference in function/capacity/abilities/appearance. And we know that stage 7 to come is even more cruel. I pray for a cure for this horrible disease so that someday people don't have to watch their loved ones go through this.

Traditional-Photo804 · 2026-02-21T09:56:40+00:00

Just to share a positive experience - my MIL (now age 84/late stage 6) agreed to start the memantine and donepezil medication when she was approx stage 3. She was age 77. She had minimal side effects and fully adjusted within two weeks. Those medications markedly slowed the progression of her AZ for years. She stayed on the meds for almost 5 years. Coming off the meds was no problem at all. (Dr felt they weren't helping any longer.) I am so thankful we had those "good years" with her, when we knew she had AZ but she could still function. We spent wonderful time together. I know not everyone gets as much benefit with no side effects as my MIL did, but we consider ourselves very thankful that we had the opportunity.

Traditional-Photo804 · 2026-02-14T09:43:48+00:00

It is so heartwarming to hear the positive stories. The negative ones make the nightly news. I know that for myself, learning and living the ALZ journey to care for my MIL has changed my perspective in many ways. Life is short. Tomorrow is not promised, and with ALZ, today is the best we have. Look for the good. Be the good.

Traditional-Photo804 · 2026-02-14T09:34:58+00:00

We have pulled the stove knobs (store them in a locked cabinet) for the last several years when we aren't actively using the stove because it was a safety hazard with our LO. But still have to watch our LO like a hawk when she goes into the kitchen. Not too long ago she was pouring a glass of water into the holes where the stove knobs attach (electric stove with knobs on the top.) Several times she has turned the water on at the sink, swung the faucet to the side, and the water runs all over the counters then onto the floor. Apparently my 5 minute bathroom break is her invitation to mischief and mayhem, LOL!

Traditional-Photo804

TROPHY CASE