Can decline be this fast?

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Can decline be this fast?

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It seems over the past two weeks, my 90-yr-old mother with dementia has declined quickly. She spends two weeks at her own home with me there, then goes to my brother's house for two weeks. During the last stay with my brother, she walked into his and his wife's bedroom at 3am, talked to their pit bull who was sleeping in his crate on the floor and that woke my brother up. She was in her pajamas but had her tennis shoes on and some of her clothes were in the basket of her walker.

When he asked her what she was doing, she said she was ready to "go home." She said that there was "a lady at her house who stays with her sometimes that would be wondering where she was." That "lady" would be me. Mom does not know where she is when she is at his house, nor why she is there and asks him about it the entire time. Sometimes she thinks he is her brother (who died 2 years ago) and she never remembers his wife's name. She can not find her way around his house (although she did get to his bedroom!) and she has to be led to whatever room she is trying to find. She has been visiting his home for over 25 years!

When she came home from his house this past Sunday, she did not know she was in her own home and did not know where anything was. She "toured the house" from one end to the other, commenting along the way about what a nice house this was and how she loved all the decor. I try to get her to go to the bathroom about every 2 hours or so but, to this day, she does not know where it is. After she uses the bathroom, she always asks, "Where do I go now?" This is a house she has lived in for over 45 years. Her inability to find her way around was not the case before this last trip to my brother's house.

Since she has been home this time, she has not used my name once. I asked her if she knew who I was and she hesitated then said "my daughter." When I asked her what my name was, she did not know.

She has severe aphasia and is difficult to understand in the best of situations. It seems to have worsened in the past few weeks.

I guess what I am asking is if this rapid decline is "normal" for this awful disease? It seems I got a different mother back this time.

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Yes it can happen at anytime, no reason and in a flash. All part of this disease. It is another step. It happened to me with my mother 12 years ago. No changing it. Now I know this could happened at anytime with my husband that also has Alzheimer’s.

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It is a shock to me how quickly Mom's condition has declined. I had no idea that this could happen. I hope it does not happen with your husband.

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I dont know that much at all but remember when i visited my mother in law in the nursing home id go once a week and for several weeks saw a man that i thought was visiting his wife.

of course i didnt see him between my visits but then i saw him one week shuffling and walking with his head down and realized he was actually a patient.

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Please read the sites of these two dementia experts - it will help you understand and is very supportive:)
Rachael Wonderlin
https://rachaelwonderlin.com/

Bob DeMarco
this particular video is about wanting to go home:
https://www.youtube.com/channel/UCBGD40ONkWGOR2z1NNAvmyQ
https://www.facebook.com/alzheimersreadingroom/

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Thank you so much for the links. I will definitely check them out. I welcome any and all knowledge to help me on this journey.

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First of all get her checked for a UTI to rule out a bladder infection, this is the first thing I do when my mom gets confused all of a sudden, and no obvious reason for the confusion. My moms culture usually comes back positive and she is placed on antibiotics, and we see the difference in a day or two as her confusion subsides. This may not be the case with your mothers confusion and disorientation, but always best to rule out things. I take care of my 97 year old mother in her own home. It is not unusual to find her a little confused after a visit somewhere. I do not think it is in the best interest of your mother to be going back and forth, she seems to get mixed all up in two different households and she can decline more quickly. It is obvious the love you and your brother have for your mother and for each other, but I think your mom misses you and feels more comfortable with you in her own home, she seems so sweet. I have been keeping my mother home since the start of the pandemic and I notice she is doing so much better, mentally and physically. I noticed one day after changing her room around for her new hospital bed, she was not sure where she was, looking around the room with a confused look on her face. I put the hospital bed back where her old bed was originally and my mother was more oriented to her surroundings. This is a horrible and heartbreaking disease and there are days I sit in bed and cry and ask God why? I pray to the Lord and get my answer. I start counting my blessings, and before I know it, I am off once again trying to do the very best I can for my precious mom with added strength and peace. These times are not easy and it can be frightening to say the least, but with the love and concern you have for your dear mom, you will know in your heart what to do in her best interest and be at peace with your decision. Wishing you the very best with peace, strength and wonderful memories as you continue the caregiving journey with your dear mom. God bless you!

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I am having a hard time typing through my tears. What a wonderful, compassionate reply. Your mother is so lucky to have you to care for her.

You are right: my Mom is so sweet and never complains about anything. It is a blessing to be able to care for her. Lately, however, I have been wondering if experience and training she would receive in a facility would be better for her than all the love and effort I make to care for her? I do the best I can for her, but is my best good enough? I know that most of the posters here will say something like, "placing her in a care facility would be the best thing for her and you both" or "placing her allows her to get the care she needs and deserves" or "you have to think of yourself, too." Trust me, I know all the reasons. And, yes, something has to change. Easier said than done.

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Just remember: first in last out.
What that means is that folks with Alzheimer or dementia remember their childhood and forget much of anything past that.

Have things around that remind her of her childhood. Sit and listen to stories of her past and ask questions.

It calms her down and makes her feel secure and loved.

I have worked with seniors for years.

A very strong suggestion is to have a name tag with contact information sewed into the back of her shirt. Many times seniors wander and are lost.

A good nurse would look there first for contact information.

Just relax and follow these instructions and you should be okay.

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Good suggestions! However, unfortunately I know very little about Mom's childhood and her aphasia makes it difficult for her to put a sentence together. I ask her about her past all the time and to tell me stories about her as a little girl. She just says she does not know. She never talks about the past or anyone in her past. There is a photo of her mother and father on the bookshelf and she asks who they are.

The name tag idea is a good one. I will keep it in mind for the future. Currently, she is never out of my sight and does not ambulate well enough to go anywhere.

Right now, her favorite things seem to be sleeping and watching Gunsmoke reruns!

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I can’t imagine that much change is good for her. After my mother fell, the surgery, rehab and move to an Alf ( from independent living) definitely affected her . She balanced out after about a year and improved a little ( delusions and needed much more help with hygiene etc) but never returned to normal and began to steadily worsen after that. Any routine change is awful for them. UTI and the isolation from Covid increased her decline and she passed away , considered mild vascular dementia with personality changes when it started to severe and end stage by April.

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I am so sorry for your loss. And I can not imagine experiencing such a loss during the pandemic situation.

I remember less than 2 years ago, my Mom walked several blocks back to the hotel with us after her grandson's wedding using only a cane! And, half the time she would forget the cane. She broke her hip the following April and nothing has ever been the same. I think have to be put under general anesthesia was the beginning of the end for her, cognitively. But, this recent Mom is not one I have ever encountered.

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It's time to quit moving her around. Can brother come to your house to provide you relief? Is there money to pay for in home care to give you relief when you need it?
Now that she's back to her own home and you - remind her who you are each day. She may get it, she may not but it won't hurt to try. Taking her out of her normal routine and surroundings is not going to work anymore. There is nothing normal about dementia - for some it happens ever so slowly and for others it is a fast decline. I have seen fast decline in others when a death occurred or when they had to leave their 'familiar' for a short period of time.

And as others have suggested - have her checked for urinary infection. UTI can create severe dementia issues and they come on quick. If she was 'lost' at your brother's house, it's possible she was not going to the bathroom when she needed to all the time. UTI is common for elderly.

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You are exactly right. She does have a UTI. I know there is an issue with hygiene with her at my brother's house. According to him, there are just things he is NOT going to do. This translates into her not getting barrier cream to apply, sitting in a soaking wet undergarment, not changing into a clean, dry undergarment first thing in the morning, etc. I keep telling him that she is not capable of remembering to do these necessary things and needs reminding at the very least.

As I stated in another post, my brother will not even consider leaving his home and wife to come to stay at Mom's house for two weeks. He is more of a "hotelier" than a caregiver. Mom stays at his house and he makes sure she gets something to eat.

I will be looking into in-home caregivers, if only for a night-shift from 10pm to 6am so I can get some sleep. Sleep is not happening now due to Mom's activity at night. However, the pandemic makes having strangers come into you home a little scary. This is mainly why I am resisting outside care at this point.

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Texas, you can crush the Bactrim and put it in applesauce. My mother is on it long term for chronic UTI's. Check with her pharmacist. My mother could not swallow such a big pill or even half of it, high risk for choking.

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Thanks, that is good to know. I had thought about crushing the pill. At this point, Mom can swallow a half-pill at a time but it is not easy for her. I wonder if I could hide it in ice cream since she won't eat applesauce? She does not eat much at all anymore, although she did eat 1/2 a Wendy's burger last evening. She will never eat a whole anything. Even sandwiches have to be only a half portion.

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I have not read answers yet and assume they rightly say it can all vary

My own dad was normal until about 90 and a half. Over a couple of months he really took a dive. Then leveled off for a year and a half, then a another sudden downturn for 3 months then passed.

I guess he was fortunate he wasnt cursed with ALZ that long relatively speaking and lived a long life before then of course it was not fun at the time

From my reading, and a trip to the Mayo Clinic here in Minnesota for a second opinion from a neuro, they say the later you get diagnosed the faster the decline will be. But I guess that is just a general thing.

But wanted to share our experience as it somewhat related to yours.

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Thank you for your response. Thinking back, I can see the plateaus with Mom. And perhaps this switch between living situations every two weeks has heightened the decline. My Mom's father died in 1984 as a result of what I remember to be about a 6-year bout with Alzheimer's and this disease is not something I would wish on anyone. I helped her to care for him, although it was at his home on twice weekly basis and not a live-in situation. I am sure it never entered her (or my, for that matter) mind that this would also be her fate. And now it has me thinking about my own chances of developing it. Not a fun thought process.

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Dear texasrdr22,

Firstly, hugs and prayers to you, brother, Mom & family..

Yes, I experienced a rapid decline with my Dad..It was like a light switch..He knew my name/relation, then he called me the “pill giver.” I wanted to laugh & cry, at the same time..
He would walk around the house, feeling the walls, asking to go home.. He was home!😢 He’d pack an overnight bag to go home, too..
I would try to redirect, let him know, we would “go home” soon..Usually, the “going home” is going back to their childhood home..

Hugs to Mom.. She is Blessed to have you, brother & brothers wife, to be there for her🙏🏻❤️..A terrible disease!

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Thank you for your reply. I sometimes am called "that lady who takes care of me sometimes" by Mom! I am lucky to have a family member willing to help, and I am grateful for that. But, my brother, being male, is not going to do for Mom the things I do for her. I told him to get over it, but it is not going to happen. He will place the undergarment in the bathroom, but is never going to verify that Mom put it on.

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Texas, pudding is ok, I used that before, but it made her too full with her meals. My mother never liked applesauce, but she will take most of her pills crushed in strawberry applesauce, I use the unsweetened Mott's brand cups, and she likes it. Good luck!

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She loves strawberry preserves. I will look for that strawberry applesauce. I had no idea such a thing even existed! Thanks so much for the great idea. I will try to find some and get some pudding, too. Who doesn't like pudding, right?

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I experienced the same thing with my mom. In September of 2018, I noticed that she was having some issues with bill paying, She was otherwise just as sharp as ever. Still ran her farm, with help. In November, she was having some pain, but mentally still pretty good.
By January, she was having a lot of physical issues including pneumonia and some significant cognitive decline. I figured that she would go back to normal once we got her healthy again.
By March she had CHF and her cognition came and went for the next year until she passed in March of this year. In the summer of 2019, she was doing pretty well physically, hospice almost discharged her. By September, the decline began again. The cognitive decline just happened so fast, I just couldn’t understand.
We were able to keep mom at her home with a lot of paid help, but sometimes she didn’t have any idea she was at her home. If we had moved her somewhere else, I think she would have gone downhill much faster.

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I am so sorry for your loss. Sounds like you went through a lot with your Mom. I think you make a valid point: placing Mom now would just add to the decline and confusion. Having caregivers come in now during the pandemic, is a frightening concept for me. Currently, it is only me caring for her at her home and then she has 2 weeks at my brother's house, which I think is about to come to an end. This is really hard.

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The answer is YES! Decline can happen faster than we would like. From what I am reading in your post, she is at a point with the Dementia that says - Traveling between two homes has become a bit problem. Even with mild Dementia going to and from different homes would be a problem, it takes them time to adjust to different surroundings.

I know Mom would have problems just going to the hospital and then rehab and then back to her assisted living room. It would take days/weeks to get back to feeling as if she belonged. And when the Dementia got worse, she would begin to believe she was in the wrong home.

Yes it is sad and frustrating, but we all do the best we can. I would recommend that she only be in one home. This switching is only going to get harder and harder for her to adjust to.

Good luck and bless all of you

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Hello Texas, my response is many fold. In my experience, decline towards the end can be very quick. My folks went from lucid-to the last stage - and through the last stage in a matter of weeks. As others have stated, change can be very difficult for folks with cognitive/ memory issues and cause confusion. Yes, a neurologist should be on board as part of your mom’s care team. Gathering urine for a UTI can also be very difficult and using a hat is probably your best bet. Prior to the severe decline from Alzheimer’s, my mom had several UTI,s and all caused severe confusion and a plummet in behavior until it was cleared up. For us, using the hat thing got to point where my mom was afraid to urinate because she would get that “ thing” ( the hat) all messy. Her doctor finally just started prescribing antibiotics whenever a UTI was the probable culprit. The difference between the decline in both my parents from a UTI vs the dementia was with a UTI, behavior would plummet in a day and with the disease, the plummet would be more gradual over the course of few days to a week or so. None of this is cut and dry. Everyone’s experience is unique to some extent. I have found in hearing from others, as well as my own experience, that most families used a facility at some point for their loved ones. Of course some folks were able to keep their loved ones at home, but that all depended on their support system and the type of dementia being dealt with. Whatever path you take will be the right one for your situation. I wish you the best as you manage your care as well as the care of your loved one during this difficult time.

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So sorry you are going through all this but remember you are not alone.
Glad you had Mom checked for the UTI ; that can make any of us a little loopy. Yes, declines can be dramatically swift at times. It's been my experience having taken care of my Mom and having been in LTC administration that at some point, changes in residence or locale can cause significant confusion in those suffering from any form of dementia. It is time to forgo having Mom stay at your brother's house. It will just confuse her further. No to mention that her toileting personal hygiene seem to suffer as he has adopted the son's basic premise that "oh,I can't change my Mom!" Like we girls come with directions on toileting adults! Not all men do this - I know a bunch that step up to the bat regardless of their feelings - but a lot just can't seem to get it. Try to get someone to perform home care. It will be easier on Mom although with the pandemic it will be hard to get someone and it is bound to make you and them a little nervous. Talk with her doctor and see if she is ready for hospice also.
Prayers and hugs to you, Mom and brother on this phase of your journey. You will come through it.

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Thank you for reminding me that I am not in this alone. This site has been a life-saver for me. There are so many knowledgeable and wonderful people here who are always willing to help.

Yep, you pegged my brother exactly! Also, we had a "virtual visit" with her PCP yesterday via my phone. Of course, Mom didn't really understand that we were at a doctor's appointment and seemed more fascinated by seeing herself on my phone. The doctor is used to dealing with me, and told me that all I had to do was let him know and he would send a social worker to evaluate the situation and recommend help for me. He also said that if I ever felt hospice was in order, to just let him know. The experience was pretty worthless as he could not really "see" or feel Mom or listen to her heart or examine the bump on her face that bothers her. If and when she improves with the prescribed antibiotics, perhaps an in-person visit will take place.

Prayers and hugs are always welcome, especially virtual hugs in Corona Time!

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Time to find an assisted living facility. Do not drag your feet... Move fast before you end up in a real mess. She needs to behind locked doors. Decline happens quite often because of mini-strokes followed by a larger stroke and then more mini-strokes. Then a plateau for awhile... then more mini-strokes. She needs to be seen by her doctor and have her medications adjusted. yes, it is a disease that ravages. You will see it slowly destroy over a number of years or sooner. Good luck. Might wanna involver her former pastor as well. Prayer always helps. My dear mother was a smoker and a drinker and still lasted for years-- (13)... Her ALF roommate was out of there to a nursing home and then home to Jesus in 6 months-- and all she did was cry and cry. It was terrible and rough on Mom as well. I would recommend getting a private room even if it costs more.

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You do realize that the OP's mother has dementia, right?

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Imho, moving a person with dementia can cause the confusion.

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Hugs and prayers to you and your family.
My husband just turned 58 in June and has had Alz for 10 yrs. We thought his memory loss was from Lyme disease but after in depth tests we found out 2 yrs ago it wasn't. He declined so fast when Covid started in March, I had to have Home Care come help me. After getting his meds right he was better. He could barely walk, talk and wasn't eating. Interrupting their routine is not a good thing. We own a bar/restaurant where he had a job doing the cleaning cause that's all he could do then. I had to hire a manager and give up my job to stay home with him which means our only income is his disability. I'm trying to care for him as long as I can in our home so it doesn't confuse him even though he sometimes doesn't recognize our "home". I'd say if it's possible and you can handle it, keep her in one place only. Good luck and God bless

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This pandemic situation has caused devastation on so many fronts. Your husband seems so young to have to go through this. I feel so fortunate that Mom was not in a facility when Covid hit. My heart breaks for those who have loved ones in isolation.

I admire your decision to keep your husband at home. If I can find good caregivers (not easy to do!), it would certainly help. I have learned that this is definitely not a "one-size-fits-all" disease. Everyone on here has a story of how this disease has affected them and their loved ones. The common denominator seems to be how difficult it is for everyone concerned.

Hugs and prayers to you and your family, too.

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There is no simple answer, but what I learned from my dad and his dementia. Any change in routine or environment can cause confusion and is not healthy for their mental state. They need routine and familiarity of their surroundings. While you may feel overwhelmed with caring for your mother, you must rationalize that dementia is a horrible disease and your mother will require 24/7 care. I had made my dad a promise to take care of him and not place him in a senior living facility, however it was not easily done, I ended up putting him in a home. Best thing I did for him, and for me.

Best wishes

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It is nice to hear about situations where the placement into a facility had good results. There seems to be a lot of good experiences on this forum with placing loved ones.

I would love to be able to see a list consisting of each facility that a poster has found to be "wonderful", complete with city or town where it is located and what was so good about it that made them want to highly recommend it. For example, we live in Fort Worth, TX. It would be great to get a personal recommendation for a facility here from someone on this forum who has actually had a loved one placed there. I know everyone is different and what is acceptable to some might not be to others, but at least it would be a start.

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Thank you for your reply. I suppose my thinking was that Mom had spent many happy times at my brother's house over the last 25 years or so, most of it before the dementia began. I just knew she would be familiar and comfortable with her surroundings there. Guess I have another think coming!

I just can't wrap my head around the idea that Mom would be better off in a dementia facility all alone, than with family who love her. I am starting to realize that this is something that I have to get past.

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Texas, how sweet your mother was enjoying looking at herself on your phone during the virtual appointment.

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It was an interesting experience. Not sure it did much good. Mom could not hear his questions to her and, of course, her reply to his question of "how are you?" was "Fine". At one point in the visit, I mentioned that my brother and I were taking turns caring for her and I was concerned that this may be becoming detrimental to Mom. At that point, Mom chimed in and said, "Well, they could just tie me down"! The doc got a chuckle out of that one. And, amazingly, she made a complete sentence! I take small victories whenever I can!

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Rapid declining with dementia may be due to stress. Changing homes could be stressful for your Mom over thinking where everything is when moved to each house. Our Doctor advised dementia patients when stressed goes through what they call "Stair Stepping", means when dementia patients are stressed, their dementia drastically declines. When the stress goes away, the memories lost unfortunately does not come back. It's best to keep your Mom in one house she is use to so her day to day activities are more auto motions than having to remember. Hope this helps you.

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What you say makes perfect sense. I am coming to realize that the change of homes is stressful for Mom. I noticed a few months ago that when she came back from my brother's house, she was looking for things to be in the same place they were at his house. She would ask me where such-and-such was because it was not where it was "supposed to be". Yet the item was where it has always been at HER house. The last thing Mom needs is confusion!

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This change of house is not beneficial to someone with moderate to severe dementia. I came with father and mother to spend my 1-month annual leave in my hometown, and it took mother (73 ) about a week to get used to the inside of the house here. I became aware of this immediately and realized l (we) did the wrong thing. (In my case, the main reason for coming here, to lift off the burden from my middle brother and his wife, with regard to the caregiving entailed/required..)

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The only thing I can add is that my mom started asking to go home about six months before she passed away and the couple of weeks before she went to hospice, she was calling for other members of the family and said that a man was sitting in the room staring at her. She basically went from saying short sentences to suddenly just making speech noises and nodding her head yes. This was in the course of only 48 hours. Luckily she never seemed to forget who we are, but she was sleeping a lot and singing in the middle of the night. I really think she thought she would pass away at home during her sleep, but it didn't work out that way.

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Wow! That was a rapid decline! Mom does not seem to remember anything at all, past or present. I have heard that before death some do "communicate" with long-gone relatives. In a way, I find that comforting. I want to believe that there will be someone familiar to her there to aid her in her "transition". Thanks for your reply and condolences on the loss of your mother.

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Just an FYI for a positive mind... My best friend since kindergarten bought this book for me, I've Never Loved Him More by Candy Abbott. Candy is such and inspiration, at least for me because we are in the same boat, husbands with Alzheimer's.

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Thank you for the suggestion. I will check it out.

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Check for Urinary Tract Infection as soon as humanly possible.

This infection can cause horrible effects on a fragile brain.

She’s apparently reached the point where consistency in surroundings and routine is now imperative.

if you can at all manage it, try to keep her at home as long as possible. Get help from outside agencies if you can afford it.

Nursing homes and long term care facilities are ... well, not the best thing if you can avoid it. Especially now with no visitors. I’ve worked in one and left fairly quickly.

get advice from the people here about mental stimulation. Tactile things. Pictures, colorful buttons
sorting coins, her jewelry, folding things.

God bless you and your family. It will be the hardest job you ever had, but the most rewarding.

Best wishes.

Susan

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"Check for Urinary Tract Infection as soon as humanly possible."

I was thinking the very same while reading the OP. I would do exactly this, it's incredible how fast UTI it can affect cognitive functions.

The best of luck
x Arwen

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