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Juliek1947 Asked October 2012

Is there such a thing as definition for Sundowner Syndrome? How does this differ from dementia? Anyone can help with pointing me to a website,Jk

Mum's neurosurgeon mentioned Sundowners syndrome after her 'burr hole' op for acute subdural and whilst she was recovering post surgery. I recall her mood swing (from one extreme to another)sinceand I also noticed mum started to demontrate coupulsive hehaviour paerne.g combing he hair at least 10-12 times,arrangeing her pillows in specific order when she settled to sleep; sheher body from waist downwards to her toes since the creation of an ileostomy for bowel cancer (she is not a candidate for reversal surgery since the subdural haemorrhaege and as she also has cong. hypertrophy of Lt ventricle (which did not and had not troubled her until past 1.5 year as she has suffered atrial fibrilations 3 times resulting from the surgeries she underwent -mastectomy, bowel resecion, radiotherapy, hysterectomy (sametime as bowel resection)
Mum has demonstrated repetitive traits since her craniotomy -she would comb her hair over and over again ( one action which she did not do before her brain trauma. She has, lately become very obsessive with cleanliness -she would wash herslf from waitline downwards repeatedly. She spends about hours total each day just cleanign her perineum; her buttocks and area around the ilesotomy (which she now clims to be very 'smelly' and she would become extremely angry should anyone comment about her actions. As she now also been discovered to have life limiting cancers (stage 3-4) she has become very panic at the slightest change with her ileostomy drainage; her pain level and it has become extremely difficult supporting her. She has low tolerance with pain killers -she seems to be very sensitive to most opiods pain relief (itchiness and loss of appetite ) She stops smiling and in fact she has become a worrier -she panics at the slightest discomfort or any body marks (redness)owhen her mood swing episode take effects x 2 daily. Mum looks very sad and all I cando is pray to the good Lord to give her strength to cope with the pains. I often has to remind myself not to get angry with her as she is one of a kind 'brave' individual (who had already witness her own daughter (my elder sister) suffering lung cancer (a rare type) 48 years ago!!! Now she has to face the same demons herself!!! I just pray the lord willspare her the awful discomfort that most terminal ill patient have to endure. I also am desparate to find out (if any way of minimising mum's suffering of exhaustion from her mood swings (I am pretty sure this drain energy off her!! anyone pleas help. I am most thankful. Anyone can help with pointing me to a website, Juliek

Rusty1951 Oct 2012
So is mine, she has been talking with her and she says she had forgotten how soft and sweet his voice is. This is something only they can usually see, my g,grandfather came after my aunt. We asked if it was him and a picture of him that had hung on a wall for years fell to the floor. If you are working with hospice ask your social worker or nurse about the blanket. If now ask your pharmisist where you can get one.They are worth there weight in gold.

mistymom Oct 2012
Rusty i have never heard of using the weighted blanket.i will try it.i know mom calms down after putting her lap blanket over her. (it is kinda heavy) my mom is now seeing her dead husband. I have always been told that is a sign that they are not too long lived.

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Rusty1951 Oct 2012
Yes there really is a sundowners! Get a weighted blanket, we got ours from hospice and it really helps. it's like swaddling a baby in a blanket and it calms them down withing minutes. I have spent several nights sitting up in her wheelchair until she went to sleep then went out on our couch. She is terrified when this happens to her. We now leave a lamp on in her bedroom with a 7.5 watt bulb it light the room up just enough for her to be more comfortable. We tried night llight but it didn't work becasue she see shadows and thought the devil was in her room and people were trying to get her. I hope this helps. the weighted blanket is fleece and it has plastic beads sewn into pockets thruout to make it heavy.

Juliek1947 Oct 2012
mistymum, thanks for the understanding. My mum possess a jealous personna .She couldn't stand her children being friendlywith others. It is so sad that at this stage of her life she still complain about her adult children who are in their mid-sixties being unkind to her. Indeed, she continues to manupulate between her 2 adult (the only 2 persons on earth who cares about her!!! She is doing it right now (it's nearly 12mid-night (our local time) after her grand daughter took her , my sister and I (with her husband &only child (8 months) She hass not 'whinge about how the grand-daughter and hubby separate dish from us (they elected to order their favourite dishes & ate their own food; mum has been so 'fussy about what she eats -she has always been like so. She also ordered her own dishes. Because the food turned out not to her satisfaction, she whinged non-stop. Because my sister is Buddhist and is fasting (gegetarian for haer faith!) She only had torfu and rice and she ate very fast to assist her daughter, mum became unhappy (she felt that she was lft out!!! Now my sister is her enemy.\; because my sister has to attend a special God receiving ceremony tonite-I was asked to settle mum for the night. Mum keeps whinging about my incompetence and told me I am nto good enough and she worries that she may leak and become incontinent in the night; and she accused me for not helping her with her 'spongeing (I sponge her, powdered her and had been waiting for her to get her self off the toilet seat in order to put her pampas on for her to settle. Then she started her 'abusive swaring @ me and this go on and on. I am so exhausted by her terrible verbal abuse, I really feel like telling her that if I am such a horrible daughter then why she kept 'bothering me with phone calls when I was working overseas to return to support her as my sister had not been taking good care of her. Yes, I am rally angry with her nasty words, in fact, I feel so sorry for her I just ;switch-off' and decided to get on the computer to vent my feelings. I do not know when thi is going to end as I think mum does not have much time with us, yet watching her behaving this way (??? is she really confused or she is just doing so to get attention I am 'dammed' if I know. Am I going 'potty' like her too. Please someone share similar experience if you have this kind of situation. I need some confirmation that it's is natural to feel angry and have unpleasant thought with one's own mum who is going through horrible time in her life journey on earth. It is because of her personna I am very reluctant for her to be put in NH and suffer abuses (which is likely as she is a very annoying and demanding person usually when she is well)

Kitty Oct 2012
Julie, I am truly sorry for what your mom and you are going through. I agree with Jeanne that this does not sound like Sun Downer's.

One question I have is: was you mom like this before she started taking the Lexopro or was she put on the Lexopro to treat her anxiety, mood swings, and OCD symtoms?

Carlos Oct 2012
I guess that she needs a doctor that could gives to her the medicine drug that works better to repetitive and agressive behavior in aged patients , that are the smalçl doses of the antipsychotic drug risperidone liquid (not tablets) .
I've seen some very good results with very small doses of ONLY ONE DROP of risperidone at breakfast ,lunch and dinner .But only her medicine doctor knowns what is the better for her and what drugs she can takes.

dianestark Oct 2012
My mother sundowns every single day, sometimes it's worse than others and it usually starts around 3:30 and lasts up to 4 hours depending on her bed time. I discussed this with her neurologist and he said what I am doing is okay. I give her melatonin around 5:00 or 6:00 in the evening along with her memory pill. It seems to help her adjust to the evening. Something you might discuss with her doctor.

tlhanger Oct 2012
I have always heard that "Sundowners "meant they slept all day and was up most of the night.

LikeaMother Oct 2012
Your case sounds totally different from mine but my elderly 97 yr old Aunt experienced what the nurses logged as 'Sundowning' after her double hip replacement surgerys in January. They even had her diagnosed with dementia. I found out three weeks later that they had been giving her sleeping pills each and every evening and they were causing it all. She has NO dementia and once the sleeping pills were discontinued, no more Sundowning.

tlhanger Oct 2012
A friend of mine had to place her husband in a NH as she could not physically take care of him anymore. She went there everyday and sat with him as at home, but could get help when he had to get up or had a bowel movement. She did it for four years till he died. His kids came too and the staff and them became friends. She said it was actually more tiring than when he was at home, but she was very grateful for the help.

jeannegibbs Oct 2012
Again, I am very sorry for the pain you and your mother are going through.

I don't think you are going to be able to do anything about the relationship between your mother and sister. If they wish to come to a better resolution they will work that out. Meanwhile, if your sister is willing to settle your mother in each night and that is what your mother wants, be grateful and thank your sister.

Juliek1947, please try to understand that not everyone who places their loved one in a care center does it to get them out of sight and out of mind. I have seen several people in my local support group agonize over how to keep their loved one home as long as possible, and then over the decision to place them. They spend hours every day at the care center. I have just made a decision of where to place my husband if the time comes when I cannot give him the best possible care here at home. This is NOT about what is convenient for me, it is about what is best for him, as far as I can determine that. I am NOT suggesting that you should place your mother. That is absolutely your decision. But when the hospice team suggests it please do not accuse them of lacking compassion. Sometimes it is the most compassionate thing to do. You are entitled to your beliefs and to make your own decisions. Just please don't dismiss those of us who have a different approach as lacking compassion or being self-centered.

Keep a journal of your mother's behavior and symptoms, and discuss this with the psychiatrist. Some additional medication may help.

mistymom Oct 2012
dont rule out a NH for your mother. it is not being selfish to take care of your own health too. takling care of her can wear your health down before you know it and then you would be no help to her. you are to be admired for wanting to help her. and i know taking the verbal abuse is very difficult. God bless you and your sister. i hope you pull together in this time of your mothers need instead of pulling apart. families need to work together for the best of your parent or whomever you are caring for.

tlhanger Oct 2012
I truly am sorry your mom has gone through all this. It was a lot of surgeries and she is old and not thinking right. Bless you for taking care of her, it is hard for both of you. Pray for guidance and peace from the Lord. I will pray for all of you too.

lisetta Oct 2012
My Mother has Alzhiemers and I'm a medical person working various medical positions for the last 35 yrs. before the diagnoses had a name for alheizmers and Dementia. I took care of many people of age and evening time was the worst for these people. For my Mom who is 81 she has what is called sundowners . Its been decribed to me, sundowners occurs because when the sun starts to go down it signals the brain that its time for something, a change in the days routine ,a time to do something. Think about it ,like for my mother who did work outside the home for a while and took care of her family for many years . Now she needs taken care of so when evening time comes it confusing to her, she feels the need at that time of day to do something but dosen't understand what this is. It is fustrating and confusing to her but dosen't have the capability to understand. I guess anyone who has nuerological disorder can be subject to sundowners but to have so many other medical challenges that can certainly add to the stress to . A good Dr. , good support sytem and getting help from the outside will help the patient as well as the family. You can't help your love one unless you help yourself. My advice is accept help from any resource you can find especially if this may be long term . The right kind of medication may help and remember if one dosen't work there are others don't be afraid to ask.

Juliek1947 Oct 2012
Hummingbird, thanks for sharing. My concerns are not about mum being abusive and 'acting' strange . My worries are that my sister would look to the nearest and easiest solution, put mum in a NH. This suggestion also came from the Hospice and I am really troubled by the lack of 'compassion' of these few person who are meant tp assist me in supporting mum through her end stages of life. I do not, absolutely support 'ending' anyone's demise through NH.
because I have had many friends who although able. actually decided that it 'suit' them better even is for temorary durtion to 'farm' their loved one (mother /father/ and in-law) to spend the last days o their life on earth , die @ a nursing home because it's out of sight, out of mind (or some people refer this act as one of kindness, I rather view this as pure selfishness. For example my mum would inssts that my sister 'settle her' for the night because she believes that my sister does a better job of putting on her pampas in order she can slwwp through the night with no worries of incontinence, I have tried my utmost to persuade mum to allow me to assist in order that she can settle for the night earlier than 10pm. However. who has nil consideraton of the fears mum has and also it's her opinion that I am not going to 'please you' I need my own life so you just hae to wait until I am hapy to settle you for the night @ around 11pm. THis is pure punishment and I view this as being very unkind. I am refering to a sister whom I had always admired since we were very young and she has become such and inconsederateperson. I spoke with her daughter re my concrs for her grandmother (our mum) NEVER offers any suggestion. I again has been really disappointed by them both as I know mum does not have much time with us!!! Yes, I am like you when I think about mum's battle with cancers and the tough life she had lived to bring us up, I forgive her for being so nasty to me. But I still feel very sad that I can't do more for her because mum always beleive her children should have equeal sheare o. That's why she has used sabusive kanguage to 'rub off' me and hoping I will tell my sister off (mum had been during this to me as long as I can remember -making me as buffer between her and my eldest sister who for some reasons dislike mum immenswly and she had accused mum for breaking up her marriage and ruin her life (which is quite untrue, yes mum may have contributed to some degree to my sis relationship my ex- brotherin-law has just as much to be held responsible for the relationship breakup between him and my sister, this his daughter had recently confessed to me how she is not forgiving him for not atending her wedding and had not bother to contact her when she gave birth to his 1st grandson!!! I STILL LOVE MY MUM vry much for who she was BUT FEEL REALLY AND HELPLESS FOR WHO SHE HAS BECOME TODAY -weak confused, agitated and worrisome. Thank (((((hug)))) Take care

hummingbird1 Oct 2012
I dont know if this will help you, but you are not alone. My mother and father had to stay with me for 3 weeks... during this time my mother was very jealous, thinking I was keeping her from my father whenever I tried to put her to bed...she has trouble walking and forgets her walker .. when I try to bring her walker to her she pushes me away and tells me she just doesnt like me. I am the oldest and really the only one that has taken care of her. My mother thinks I am his girlfriend and forgets I am their daughter....but from what I hear, it is not unusual. She almost acts like a little girl and the look on her face can sometimes be very scary and other times like she is afraid. Sundowners is a real thing..during the day she seems to be much better. Knowing that these things your mother is doing is just a part of the illness will help you to know you are doing nothing wrong. I get tired and depressed, but then I think of what she is going thru and my troubles seem small.

Juliek1947 Oct 2012
Mum was presecribe antidepressant (Lexapro) x 1 daily. The past week after an episode of Rotaviral gastroenteritis during which she became clinically dehydrated. Her behaviour has become even worse. She dislike being reminded to take her medications; she blames me for creating all her problems,
She thinks I am evil and she has become 'pranoid' at the slightest. I think she hears voices. In short I feel she is really beyond 'help'.She is not due to see the geriatric psychiatrist for another 2 weeks. I took her to the local GP all he could do was just listen. Sadly, shen he told her he noticed that she has lost more weight he last reviewed her, she has become even more paranoid. At present
she has become even more uncooperatuve, she would not allow me to be near her -she keeps calling me 'devil'. The awful names she call me has bcome even more unbearable. I feel really really sad and helpless that I am unable to help her; console her I think she is extremely 'frightened' of dying on one hand and on the other she just 'simply' refuse comfort from both my sister and I. I had made several approaches to the Church that she attends, but so far, I haven't heard anything from them. Meanwhile. I am worry that her fears will exhaust her so much that she will end up being hospitalised ??? then she would be evn more distressed. Please helpyone. Juliek1947

jeannegibbs Oct 2012
I am very sorry about the pain and distress your mother is experiencing. My wish for both of you is the strength to get through this difficult time.

I believe that "sundowning" usually refers to behaviors that occur or worsen at twilight in people who have dementia. Not everyone who has dementia has this happen. I've also heard "sundown syndrome" used to refer to seasonal affective disorder (SAD) which is depression brought on by lack of light (such as in winter in northern climates), What you describe doesn't seem to fit either use of the term -- unless your mother's behaviors occur at sunset. So I'd have to ask the doctor what he or she meant, and for any suggestions of how to cope with it.

Has Mother been seen by a geriatric psychiatrist? There may be a medication that could ease some of the anxiety and panic attacks.

Best wishes to you both in this very challenging time.

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