Thank you all.

HI I am dealing with my husband who has dementia. He has been in a nursing home for three months . Every day he calls and wants to come home , I take him food, candy . It is hard . He cries and begs get me out. He will call me about ten times a day and ask the same questions. It is more harder now than when he was home. Suggestions

My hubby is going to be 85 next month...and yes he has become almost mute...he grunts and makes what I call bird call sounds like caw caw..hard to describe...it drives me insane; you cannot say hey, will you stop it...next problem is he makes these sounds when he sleeps and I guess he has sundown syndrome because he sits up and starts to take off his t-shirt and then I show him it is dark outside; does not register so I get broken sleep every night; half the time I wind up on the couch but with one ear open...I tried Melatonin....does nothing...there must be a medication besides Ambien which does nothing for him...does anyone in this forum have any suggestions what will keep him asleep so I can rest? I am exhausted and as a Diabetic I need proper sleep; not broken sleep...I am so tired I have bags under my eyes which makes me look horrible....so if anyone has suggestions for me and knows of these bird sounds, please let me know before I wind up in an institution before he does.

Why does my spouse choose to hang his head down by his knees whenever he is sitting in a chair? He is also choosing not to eat hardly anything. He no longer watches T.V. and only communicate rarely. He says he is not hungry. How can I keep him nourished so he won't weaken and fall.

Mother has Prozac for the Depression which helps, and I take her out on sunny days only. Her moods are varied depending on the weather.
Confusion and dreams are caused by other family members asking questions to her and showing photo's, as careers, my wife have sent loads of fact sheets to family members and they still come back not understanding her condition, and this makes Mum feel anxious and to keep asking where we will be.
We are either in the next room or downstairs, we show her the pager and monitor and explain how they work and we do this over and over again to reassure her.
Reassurance is a common daily event, and doesn't like mixing with other older people, her comments are horrible, says things like, they talk a lot of rot, take me home, I don't like to moan but it does take my wife and I at least 3 days to calm her each time.
Carer's would not work, does not like strangers, even her 2 other sons and wives she starts shaking and whispers to me, when are they leaving, I don't know who they are.
My brother had a home career and Mum went to a weekly day centre, but as Mum's condition got worse and needed 24/7 care, my wife and I have loved and cared for Mum for 6 months now.
Yes, we are both tired, but we are coping the best way we can each day, we keep a log of every day, but our confusion is that the doctor, memory clinic, scans and other day care centres do not want Mum because she needs so much care.
Are we spoiling her, No I don't think so, my wife has even made a bean mattress for the backseat of the car so as Mum goes everywhere we go.
Mum is happy watching one program only and that is Dr. Martin and we regulate the times daily depending on Mum's condition of the day.
The sleeping tablets we have been advised by the doctor on Friday to increase to 10mg (2 tablets).
This we started over weekend, giving one at 3.00pm and at 10.00pm after her shower.
3.00pm, awake at 6.00pm, eats, watches TV, try to walk her around on walker, looking at birds etc, exhausted and can't wait to get back to her chair to watch more of Dr. Martin.
10.30pm, Bed and then every hour wants toilet, so how does the brain tell her that she wants toilet all the time, daytime every 2-3 hours.
What are we to do, anybody out there have any suggestions.....

Michael
United Kingdom

I am experiencing all of that as well. Depression is also a characteristic of dementia and not just yours. Mom likes to dance. After her stint in rehab, she is unable to use her legs as before, but give her the walker and she's a dancing machine.

I changed the lock to a deadbolt because she wants to go home every night. Her "home" has been gone since April. She still loves church and this week we are going back to senior center so she can continue chair yoga. Tomorrow we are going to an Adult Daycare where I will be able to leave her and take care of me once in a while. Have you contacted the Dept of Aging in your town? Sometimes they can provide free supplies as well as help 2-3 days per week. Help means receiving a caregiver 2-3 days in your home for 4-8 hours each day to give you some time to yourself. Mom mind and body needs to be stimulated. Is she ever around people in her age group? Do you take her out just as if she has no dementia. The trick is to keep normalcy at a maximum, which can help everyone involved. Hope this helps.

My mother is doing all of the above, but I am confused as to why you don't explain the next stages, for example we started Mum on 5mg of sleeping tablets, no change, still wakes and wants toilet every one to two hours throughout night and day.
Patience, stress, my wife and I can handle, we find singing, laughing the best way and making jokes of the funny episodes, but the constant body pains have gone away since taking the sleeping tablets, so we are left with the constant toilet issue, this is the real problem to deal with, Mum not realising the toilet, to sit on, to pull pants down, we have pull up pants for her, because ordinary pants just not working and had many tears and accidents, so doesn't understand about toilet tissue or washing hands after, we have so many issues of bad and nasty behaviour from Mum.
So the hardest part of Dementia to deal with is the TOILET ISSUES.
Any ideas anybody?
We also have Pager, Baby monitor, stairlift, raised toilet frame, in fact everything to make Mum's life more comfortable.
Just what is the next stage of this disease......No one will tell us, not even the doctor,
We are also experiencing Mum having loads of body shaking, legs not working, speech problems - this is due to her dreams throughout the night, we hold her hand, we talk softly to her (at all times) my wife brushes her hair, we have tried even hot chocolate, sorry I am going on a it.

Michael,UK

Reading these stories are great help to me that I'm not the only one..my true struggle is that I work in a nursing/asst living facility that of which I ut my mom bc I thought it would be good for her n me but I've noticed that I have all the patience in the world for the people that are not my mother..I think I'm still stuck in the thought that my mom shouldn't be upset sad acting difficult..just looking for some insight

Excellent article. I am experiencing everything mentioned. Although now I think I have a better handle on it or how to have a better handle on it.

No there really nothing we can do. Just keep the patience and show no upset.

I think this is totally accurate and totally unfortunate. There really isn't anything we can do.

Sorry .This a comment in ref. To Dramalouie comment.Asked for endocrinologist for mother in October 2015 and still waiting in Apeil 1015. ACHA,ADA, Paitent Civil Rights violation.Reasonable accomodations Greater Than 30days from request to response.
CONTACT WRITING AND VERBAL AND DONT WAIT.
OMSBUD OFFFICE ; MEDICARE ; MEDICAID; ELDER AFFAIRS; DCF;ACHA; ADAAdvocates in your state witb a complaint to be investigated. If this legitimate request has been ignored for areater than 30 days non compliance ADA/Pt Civil Rights Violation, timely manner, compliain #1; greater than 60days,complaint #2; non compliance 90 days, complaint #3;Now Complaint #4 Continued Violation of Timely Manner of Pt. Request for Services/Consult/Treatment.Greater than 30days, Continued violation past 90 days, Complaint #4.
Write in complaint what requested and send via fax to all the above inc. ADA on Pensylvania.Violation ADAAct 504 least restrictive enviorment reasonable accomidations (evidence because you gave he yourself what you req referral for and her response to the therapy. ADA505 Reasonable accomodation. Greater than 30 days from request to response. (Each 30day time period is a VIOLATION. Cc. Cand also be sent to State/National Board of Departmental Regulation and Licensure.
This is her Constitutional Civil Right to be heard and
responded to for treatment.
You are her Advocate.
Kudos to you for what you have done for her.

Thank you thank you thank you!!

I also subscribe to Memory People,which is a wonderful Facebook site. I wish there was a way to forward these articles, like this one, to my family members. Thanks you for your thoughts.

Excellent article. I can relate to a lot of these issues while caring for my mother. Thank you for "keeping me in check."

My mom's Dr. Says she is doing fine. My brother use to have dinner with her every night and call her or stop in for a few minutes on the weekend. I would travel from another city every weekend to spend a day with her. I found my brother dead in December after I got Mom to tell me she hadn't seen or heard from him for over a week. Of course this was such a traumatic event for mom. There is now just her and myself (daughter). She has never shown emotion in front of anyone. I have spent four days every week with her since my brother's death. I did not want her to be alone and wanted to be there if she need any help. Each week I have returned home being emotionally exhausted. She tells me that she wishes that my brother was still alive. I have told her that I do also and wish I was dead instead of him. She repeats her self constantly, looks at the newspaper to see what day it is, checks for the mail until it gets dark, redoes everything I do for her, etc. I have tried to talk to her to see how she feels about me coming. She feels like I am an intruder and keeps her from her routine. I have know for a long time that she has not loved me but I still want to be there for her. I left her yesterday because I do not know what to do any more.

Thank you - this is very helpful. My husband is exhibiting dementia behaviors - he doesn't like my attention being anywhere other than on him and his interests and needs. I have to ignore him to get things done and more and more has fallen on me to do. I had a heart attack last year and now require more attention myself in terms of foods, medication and exercise so unfortunately, I am unable to meet all fo his needs. i look after all basic needs - food, laundry, bed changing, social, doctor's appointments, dental, medical - but can't continuously help him with his exercises or minor matters like his computer, ipad, He pouts because he doesn't get enough attention. He was a technician but can no longer put together even simple things or figure out directions, or read directions and comprehend them but need help to comprehend what he is reading. His memory is still not bad and he can play cards. Hard for me to understand. His doctor has not cooperated with testing. Do you have any articles regarding this form of dementia? Thank you.

Over and over and over again, oh my, and again and again. Its so sad and drains my energy, but my love and remembering that once I was the one asking all the questions under the sun, being sick on her, weeing on her, waking her up during the night. Now its her turn, I am now her mother and she is now becoming my child, becoming ever younger in her ways but not in her looks. I don't look up dementia or go to dementia carers classes, I don't want to know what happens next, I just deal with each day as it comes. I have teenagers, I have their teenager tantrums when I get back home, my husband walked out on me and my Mum started dementia when my Dad died and I have a dictatorial brother who lives a few miles from Mum and despite asking him for help he just pops in for a few hours a week. Hhhmmmm, yes I am stressed up to the eyeballs but I take anti-stress supplements, I try and get a decent nights sleep, take my vitamins and minerals which all help to calm me since I had a heart attack a few years ago I know I have to avoid stress, a bit difficult in my situation.
I give my Mum supplements but they are keeping her happy, bouncy, sometimes she has her down days but mostly she is upbeat. I haven't told her she has dementia, just its her age, she seems to have accepted it. I take her out for trips in the car, looking at the countryside, it calms me down, I put on the radio and I just drive. We usually incorporate a walk somewhere to keep her strong although her pulling on my arm I get backache and I now have an arched back from leaning forward. She used to be in bed all day for weeks and I took her to the doctor, as she has low thyroid I learnt that the older one gets its more difficult to convert the synthetic version of thyroxine to the usable T3, I asked if she could see an endocrinoligist, this was October 2015, we are still waiting in April 2016. I bought in some T3 and gave it to her myself, slowly and getting advice myself, she now has a lot more energy, her mental state has greatly improved and gets herself out of bed and dresses in the morning. Do make sure its not low thyroid or hormones. She would be in a care home by now if I hadn't intervened myself. I didn't have anything to lose, she was practically a vegetable at that time.

Guilty as charged! What I want to know is what to do to help him be less afraid to be alone. Put him in assisted living? Thanks for your insights, Rick.

I think what strikes me most about this article is that Rick is still the articulate, intelligent man he has always been, but with a few quirks. Too often when we think of dementia (yes, even we caregivers who know better) we call to mind those in the later stages who have become totally lost. This brings home that it isn't a before and after, black and white sort of disease, but many gradually deepening shades of grey.

Not there yet but consider the all the information I am hoping that somewhere deep in my, they register and will give me a foundation to help make it easier for my caregivers when it happens.

For those of us who are caregivers or patients, I think this "Ted Talks" presentation from YouTube is really important. It turned on a light bulb for me about brain disorders. youtube/watch?v=esPRsT-lmw8 You may have to copy and paste into your browser.

Was this article too insightful for a memory impaired person? I'm not sure but it's definitely a strange but true twist in perspective as noted by this 57 year old daughter to 88 year old mother with dementia.

Your points are well taken. I went through this with my husband who died in 2012. Trying to devise ways to help someone with dementia remember things or stop asking the same questions repeatedly is only adding more stress to yourself. You're right in saying to just accept it for what it is and realize their behavior will be ever-changing. Your insight is invaluable! Thank you!

I understand everything you have written. My father has dementia and I immediately realized that we have to go along with him instead of contradicting. If I gently ask him to let me do whatever is needed or explain to him what I'm about to do when handling him, he is much more cooperative.
They say coconut is very good for the brain.
Good luck and thank you for this article.

I need to save this and re-read it every time I go see my mom........huge! Thank you Rick Phelps.....Bless you.

Yes my mom asks me every few seconds what day it is. I just tell her. Mom has many strange behaviors since having surgery from hip surgery. Last night she told me she was going to a nightclub, I just played along and said have fun. Sometimes she cries because she is scared,depressed. Sometimes she asks me how I feel as I have failing health myself. Sometimes she likes her new apt in the nursing home and seems to know this is her new place to live. Sometimes she hates it and wants to go out with friends to go shopping. It is different daily. I have learned to go with it. She never remembers my daily visits. So sad