Caring for Late Moderate Dementia: A Caregiver's Guide

My dad is showing signs and symptoms of dementia and is only 67. He was previously diagnosed with Parkinson's. I am looking for any advice, help, support. I am the only child and his wife recently passed away.

changed to late moderate stage can't find { join the conversation} that is recent, all months old

It seems like everyone is pushing me to institutionalize my mother ( mostly my siblings). I feel I just need a few days of respite care. I haven't had a vacation in over 3 years. Not sure what to do?

How do you handle it when your parent words are no longer understandable. She will have a word here or there that I can understand but rest is just not understandable. And she keeps trying to tell me things. From what I can tell it must sound okay in her head. But does not come out understandable. Very difficult when they can't communicate for sure.

What about waking up in panic from nightmares? What should I be expecting next?

I dont know what stage Dad is in, the question list only partly pertains to him. Dad has been ill 5 yrs, but past 2 1/2 yrs he cant walk, feed himself or barely lift his arms. Doesnt talk much, but when he does it just isnt DAD! My dad was respectful of females, wouldnt swear nor let anyone else in front of a woman. Now he talks like a sailor, makes sexual comments and demands...even to me. It kills me to hear this. I change his diapers, wet sheets and clothes, spoon feed him, clean his ears, nose, trim his nails, wash his hair and cut it. Keep his Dr appts, prescriptions filled, mail his bills and do his insurance and taxes. I also have a 6 day a week full time job. A CNA comes in the mornings then leaves when I get home. I take over from there and on Sundays I take care of Dad. I guess if he just acted like the ole Dad I grew up knowing, I wouldnt mind being so exhausted. He is so different. Everything he sees on TV, he thinks is real. He says people are standing behind me when no one is here. He cant roll over on his own but has to be switched from side to side to prevent bed sores, but Dad gets upset every time I roll him over. I tell you, this is the toughest thing I can recall having to do. I find myself wishing and praying it was over. I feel bad about that. It's something I cant help feeling. I love Dad dearly. Best father in the world! Still...what on earth brings us to this point in our lives and why must it drag out for so terribly long?

I wrote a comment and looked below to see the last one was written 7 months ago! I need to be in a more interactive conversation. :)

I think I am finally on the right conversation site. Is this the one with one sister being Ann? I am the one working with the one who has communicated some. I will help her go back to profile and change some names. We are climbing a rugged mountain with few plateaus while trying from a distance to make sure our sweet, most of the time, Mother.I found this site in March and thought it would be great for all of us. Only we two are cooperating.!!

I accidentally joined mild stage group and need this group.

I am finally on. My screen name is cupcookie~I have been referred to as Char by one member. I am looking for support in ways to care for our mother when family does not agree on her care. Mother worked hard to prepare for her later years, but the main caregiver by way of geography doesn't want to spend Mother's money on getting care in during difficult times. Yesterday my mother was left alone all day and evening long. Talking to her on the phone most of the day to keep her feeling safe is what another sister and I had to do. She did not want to leave her bedroom. She was lonely and crying. She was hungry and eating only an apple. Sister in charge threatened me with,"I will take measures against you." When I mentioned calling Mother's doctor on Monday to get home health back in. She has a cut leg and had homehealth, but Sis discharged her. Sis could not answer me when I asked what kind of measures she would take. Today, Sis had her daughter call me to yell, scold and threaten me for not agreeing with their plan (that leaves mother frightened by herself all day). She gave me an ultimatum....I and other sister go down and take over or they were all getting in their cars and coming up here to I assume move in with the 4th sister who lives not far from me and can house them in her basement. They were prepared to leave mother. Then Sis calls my husband to tell him to tell me to back off or she willl bring mother up here and leave her with me. We will do that, but we will have to hire full-time help because I have MS and complications from a surgery. I just returned from a week at Mayo and not finished there yet! What does one do with a Sis in charge because she lives there, has had many material perks, including a water-front lot given her to build on and be close to Mother to care for her as she got older. I am baffled, hurt and confused at how this is happening.

Very helpful. My 86 years old mother fits perfectly in the late moderate stage. Best explanation of each stage I have seen in the whole web. Thanks a lot!!!

Hi My Husband is 67 and was diagnosed with mixed vascular dementure last year. He is a totally different person. He looks straight through me. he cannot speak much but can manage yes anf no to other people but not me. It is really frustraiting and is getting me down as ll I seem to do is bath himfeed him still work3 days a week and with no thanks at all. Feel as though my loife is ov er as well or that he is blaming me in some way . Sorry sounds as though I am moaning

My wife is 36 yrs. old, She shows almost every symptom of dememtia. Sleeping most of the day, and up at night, fumbling around. I watch her, and it scares me! I am scared that she can hurt herself, or our kids. Please help!

My wife is 36 yrs. old. She shows every symptom of dememtia. Can it attack my wife at such a young age? Please Help!

Hello pig, Thank you very much for your comment. If you'd like, you can post any questions you have in our Ask & Answer section, located here: ( http://www.caring.com/ask ). I hope that helps, take care! -- Emily | Community Manager

does everyone get dementia? he has had alot of things happen to him this year to his body. how can this come up so fast?

yes very. i am begining to understand things better and know that my husband's symptoms are not all typical and that he is an individual who needsa individual solutions to his problems

Very helpful. Made me see things in a new light. Thanks

Hello CharD, Thank you for your question. Here is an Ask & Answer page that you may find helpful: ( http://www.caring.com/questions/declaring-parent-incompetent ). I hope that helps. -- Emily | Community Manager

How do you know when it is time to start the process of declaring your parent as incompetent?

I sent this to family members lilving in other states. They can't help out here, but by letters and phone calls they can be an encouragement to both of us.

Realizing that there are no solutions and no easy answers to any of these situations I decided to make the best of an on-going growing worsening condition and write a blog. Try at little levity at deborah-djblog.blogspot. com. It certainly can't hurt.

We just moved my 92 year old Mom in with us in May. This information has been really helpful, particularly in identifying her symptoms and how to care for myself. I must say, though, that it's the constant repeating of questions that drives me NUTS! There, got that off my chest. Thanks for the outlet.

Thanks. Good article and help though it barely scratches the surface of what I am going through with my mother.

Mom was admitted in hospital for not eating, not drinking and hardly walking. She was very very confused. Her memory is worse and we are traveling. Called to see how she was as we are traveling and they can't tell me as I need a code. Can't get the code over the phone. Heading out tomorrow so will see her at hospital. Know they are treating her for urinary infection but as far as eating and drinking it may not change. She is At later stage now. Praying the lord be merciful to her. Pray what is best for her happens. God is in charge of her now I guess.

I am new to this and just a friend of the family. We do seem to butt heads at least once a day and it bothers me so much. I know he doesn't mean to, and nor do I. Sometimes I feel like a child in my reactions.

well my main goal was to find out where we are standing and what stage we are in. My mother even before this hit has always been very stubborn and kicks everyone out that wants to help her she has canceled therepy phisical therepy nurses coming in to help and more. she is now staying with me because we could not get any help to pay for her care as far as a home. i was just wondering how fast things go downhill from here because she has declined fast. just need to kinda know where i stand as far as what to expect and no one really wants to tell me the truth. thanks for the information Shirlene

My Mother is coming to live with me in another state for 6 months, my brother and I share her care. I know this is going to be a disruption for her and I am looking for tips to help her adjust. I also work full time and will be having a caregiver come to my home during the day. Thank you.

While it reiterates much of what you read about caregiving it is always helpful to go over it. It validates what I am feeling.

I have found a valuable and helpful resource. Its called the 36 hour day. Ordered it from Amazon. Best read on the subject i have seen so far. Highly recommend to all my fellow caretakers. Has helped me in many ways with sadness, stress, understanding, mourning loss of who Mom was.

My mother is at the severe, moderate level so some days are better then others. The worst part for me is that my own grieving that I am doing for the lose of the mother that I had seems to overwhelm me if I think about her condition too much. I seem to be doing a lot of crying and missing her even when I see her every day. I also have a father-in-law with dementia that my husband and I halp take care of. You articles have been a help to let me know that it is all right to grieve the lose of who those people were and who they are now.

Already new most of it, went thru it with my Mom, not quite sure if this is what my husband has or not, could me depression. Trying to decide which one it is.

Just by explaining more of the little details , some days are better than others for her, what really seems to matter is the temp. outside, the warmer the better.

Hi anonymous, Sorry to hear you're in a rough situation. Alzheimer's is a heart breaking and difficult disease. But there is help, Caring.com offers a wonderful program called Steps & Stages where you can get practical tips about the symptoms you are seeing. In addition, you'll have access to our Stage Groups, which is like a support group filled with other Caring.com members sharing experiences, advice, and venting. You can join Steps & Stages, here: ( http://www.caring.com/steps-stages/alzheimers ). I hope this resource helps, take care -- Emily | Community Manager

I'M THE PRIMARY CAREGIVER OF MY 91-YEAR-OLD ALZEIMER MOTHER-IN-LAW AND MY DISABLED AND INCONTINENT 86-YEAR-OLD FATHER-IN-LAW, WHO HAS BEEN BED-RIDEN FOR OVER 10 YEARS DUE TO AN INOPERABLE AND BENIGN BRAIN TUMOR. THEY HAVE ONLY ONE SON IN HIS LATE FIFTIES, WHO NEEDS TO TO WORK FULL-TIME TO SUPPORT ME AND MY SOON TO GRADUATE FROM COLLEGE THIRD CHILD, AND NO CLOSE RELATIVES. I'VE BEEN SEMI-CARING FOR MY IN-LAW'S FOR OVER 20 YEARS AND HAVE HAD TO CARE FOR THEM 24-HOURS FOR OVER TWO YEARS IN MY HOME. THEY HAVE ALWAYS LIVED FOR THEIR OWN PLEASURE AS INDIVIDUALS AND NOT AS A MARRIED COUPLE. MY HUSBAND WAS RAISED DAY AND NIGHT, AND WEEKENDS BY A BABYSITTER HE CALLED MOMMY, NOW DECEASED, AND HIS UNCLE, NOW DECEASED. BECAUSE MY MOTHER-IN-LAW WAS CRUEL TO MY FATHER-IN-LAW MOST OF HER LIFE AND SOMETIMES HITS HIM, WE BUILT A STUDIO ATTACHMENT TO OUR HOUSE TO CARE FOR HIM AND TRY TO LOCK HER OUT. HAVING TO ALWAYS EXPLAIN WHY SHE IS NOT ALLOWED TO VISIT WITH MY FATHER-IN-LAW IS A DAILY PROBLEM. MY MOTHER-IN-LAW HAS ALWAYS BEEN A CRONIC COMPLAINER AND SYMPATHY MANIPULATOR. IN PUBLIC, SHE SEEMS LIKE A SWEET, LITTLE , OLD LADY. I DEFINITELY FEEL GUILTY ABOUT PLACING HER IN A NURSING HOME. BUT I DO ALLOW MYSELF A BREAK ONCE A WEEK WHEN I PAY A C.N.A. TO TAKE MY MOTHER-IN-LAW FOR AN OVER-THE-NIGHT STAY AT HER HOME. MY MOTHER-IN-LAW NEEDS DAILY CATHETERING AND BATHING BUT IS AMBULATORY. TO KEEP MY SANITY I SEND MY MOTHER-IN-LAW TO DAY CARE, THEREFORE, HER CARE HAS REACHED OVER $30,000 PER YEAR, ALMOST THE COST OF A YEARLY COLLEGE TUITION PAYMENTS. MY IN-LAWS EXPECT THEIR SON TO TAKE CARE OF THEM AND DO NOT WANT TO BE SENT TO A NURSING HOME. HOW DO YOU KEEP YOUR CHIN UP WHEN YOU SEE NO END IN SIGHT?

I often feel guilty about being out and about doing just errands and maybe stop for lunch with a friend. I need to have fun without always feeling guilty.

The old memories,like wanting to go home,and wanting her Grandmother who she lived with as a child and who has been gone since the early 80's.and also not knowing what a TV remote is.I guess I have finally realized I can't do this alone any more.I need to read articles like these. Thank You

I guess we have been doing the right thing, But its hard.

Since my husband was in the hospital and had two procedures where he underwent anesthesia, and then went to rehab, we are not doing too well. He was in rehab for about 3 weeks, and then I was told that his therapy was completed and I could take him home. Last Saturday I brought him home and since that time he does not want to get up - he sleeps all day, and he will not eat. I have taken to giving him protien shakes with ice cream, half a banana, and some fiber. I have been able to get him to drink those, but under duress, and he is listless and totally unresponsive to everything around him. He has lost a lot of weight - from 156 down to 134. I am really worried.

Thanks for the tips on staying healthy and getting family financial support. They are still a couple who could help more, since I have given up work to do this. I already do updates to them on changes, but think I will do them more frequently. Glad I found this online source for help. I am also looking into respite care a couple times a week. Mom can still stay buy herself for a few hours, but know that will change and also I would like to be gone for a day sometimes.

The sundown syndrome, taking care of the carer too. Action steps are very helpful.

Mom (83)moved in with us a year ago. She was living in an 10th floor apt in the city and I moved her out to the country with us. They were definite signs of dementia as she had some paranoid symptoms and we found that she was not going down and doing laundry or leaving the apt much. Also her meds, of which she has plenty were not being taken as prescribed. I got her some chickens last Spring because it is one of the things she remembered enjoying. It went well for awhile as she took the responsibility very serious. Going out twice a day and so forth. But then I realized that she probably was not feeding them as she should. I let her continue and we did butcher them, but they were not too meaty! They make great stew though. The point of it all was to keep her mind active and it was a learning experience for me. I plan to keep her here with us as long as its possible, hopefully til the Lord takes her home. I mostly am in need of support and knowledge as this is quite challenging. I have had to learn and relearn that I cannot have the expectations I had of the lively, independent, stubborn woman who used to be my Mom. It is painful to watch. I do have support from my siblings as much as they can, financially and otherwise. I feel we have the perfect setting for her and so if I can find ways to deal with the stress, it will all work!

talking to others about updates on conditions & grieving is a natural process.I feel as if I've lost my best friend & want him back most of family is out of town.sometimes I wonder if I'm the one loosing it Is this a normal reaction, to question yourself ?

MY MOM'S PROBLEM IS SHE SEE'S PEOPLE THAT AREN'T THERE. SHE IS WONDERING WHY THEY ARE STAYING IN HER HOUSE. SEEING THINGS IS HER WORSE PROBLEM

Denial is normal, then reality sets in after you have done everything possible to care for your loved one. The hardest part for me is seeing my mother slowly, painfully lose the last functioning part of her mind. Realizing that she will never be the same again is the most painful. However, learning how to deal with the disease, and ways to provide better care for my mother have brought about a greater understanding of the disease and complete forgiveness of anything my mother did even 10 years ago. Now I know why. Now I can help keep her comfortable. Keep your sense of humor in tact, and give yourself a break once in awhile.

I provide support for unpaid family caregivers and I am a caregiver for my 87 year old Mother. At first blush, it seems that this webiste may prove useful for me, my clients, and members of my extended family.

Immediate family members now more aware of my wife's changing condition - though our sons - with young chidren of their own, are 'busy' with their work and lives. I cna deal with issues at present - though some are hurtful. I know she does not mean it!

this was a very good article helped me with alot of things i dont understand i need to look into a class on this so i can help her more

contents re-affirm my need to remain calm in situations over which my wife cannot underatnd/control. My real grief, is seeing the person I love slowly slipping away from me - imperceptable to others family members, although they understand that changes are taking place.

I keep thinking I will wake up tomorrow and things will be better. My wife will have her mother all better. I leave before they wake up I think today is a better day. I get home and my wife is at her wits end. I try to help and fix dinner or take them out. It never works the way I dream. My wife just keep getting more exhusted and I become more frustrated. Trust me doing everything and I mean everything you can will only help your spouse. It does nothing for my mother in law. I hate this disease with every fiber of my being. It has hurt and sapped my wife of her zest for life, broken our familys and killed a loved one right before our eyes yet we still have to care for a shell the only resembles a person of love and respect. The lonlyness that this disease puts on the caregiver is without mercy. I know of nothing that hurts more than having a loved one tell you that you are not their flesh and blood. Hate and anger just abid in me daily. Yet every morning I get up praying that today will be better and my wife will have a good day. It just doesn't happen and I don't think it ever will. I fear that my mother in law will die and I will be happy how sick is that. I hate myself for not being able to fix this and bring my family back together.

realising its futile to over-react to situations beyond your - or loved ones control

My mothers lawyer advised her to give her checks to me to take care of her finances. She did this and by brothers and I have agreed this is best. She now wants her checks back and is threatening to sue me if I don't give them back. How do I handle this?

Dealing with denial? If the loved one is no longer safe living at home, there will be signs . . . like missing doctor's appointments, not answering the phone or door, mishaps in the kitchen, falling, repeated 911 responses, and hallucinations. If you are unable to care for your parent at home, which is unrealistic for most people, then start looking for and visiting nursing homes that cater to treating and socializing dementia patients. Your loved one will be safer, more emotionally stable, and you can be comforted knowing that you've done everything possible to care for your loved one.

This article is great, yet it focuses primarily on providing home care. Need more resources to help caregivers rally support for institutionalized dementia patients. These people need clothing, shoes, interaction, reading materials, simple toys, and caring liaisons.

Getting useful advices.

That I'm not alone in my own denial of my mother's dementia. It is something that I still struggle with.

Care home staff should receive compulsory training in dementia care, the Alzheimer's Society said today. Bathing Grooming