Caring for a loved one with dementia

[Jojo]

Based on people's posts in other threads, I know a number of us have loved ones (parents, inlaws, spouses, aunts or uncles) who suffer from dementia. I was hoping to dedicate a thread to those people (me included) who are dealing with the Journey of a Thousand Goodbyes.

My mom was diagnosed with Alzheimers three weeks ago. For the past five years, I knew her memory loss wasn't normal. She knew her memory was poor, but fear kept her from doing anything about it. Two and a half years ago, she promised to see a doctor about it, but she never did.

In January, I traveled to my home town to attend the funeral of my godfather. I spent a week with my parents. It was there I saw the extent her of memory loss and confusion. I always attributed her lapses when she was visiting me to the fact that she was not in her home and the stress of travel was making her worse. I'm sure it was to some extent, but that same confusion carried over to her own home. I also found out about delusions she had started having in the last month.

Her delusions are about money. In one, she was sure one of her brothers had deposited a large sum of money in her bank account, as settlement of their mother's estate. She was also sure that the brothers wanted the money back, and were going to sue her. My grandmother died 16 years ago, and the estate had been settled years before.

Then she fixated on Sears. In her mind, she had purchased a coat from Sears in December (she actually used her Visa) and she was convinced Sears was suing her for non-payment, and would throw her in jail. She went so far as to contact a lawyer about her predicament.

After I visited my parents, I wrote an email to her doctor, describing what I had observed and telling him that my dad would be making an appointment for her, so they could start tackling the memory issues. My father, who is afraid of creating any type of conflict, didn't make the appointment, but the doctor, bless him, called my mom, said he was worried about her, and asked her to come in.

After two evaluations from someone at the Alzheimers Society, my mom was diagnosed with mild Alzheimers. She was put on Respiradone, an antipsychotic, and that's all. I was very worried about Respiradone's side effects, but the Alzheimer's caseworker reassured me that first you deal with the delusions and anxiety, and then deal with the AD.

Within a few days of taking Respiradone, my mom came back, the fog in her head cleared and the delusions went away. She remembers more than she has in years, and her anxiety has decreased to the point that her drinking has decreased a lot. For years, she self-medicated with alcohol to deal with anxiety.

Now we're in the process of moving my parents from Ontario to my house in Vancouver. We're renovating the downstairs to set up an apartment for them. Given my mom's decline and my dad's lack of coping skills, they need to be with one of their kids.

A few weeks ago I was very upset and felt a lot of despair with the diagnosis, and the thought of losing my mom bit by bit. Now if she can continue this honeymoon period until she moves here, I can take care of her as she continues to decline.

As a last comment, I read "Still Alice" right after the diagnosis. It's an account of a Harvard professor who is diagnosed with early onset AD, and the novel is written in her perspective. It gave a lot of insight into how an AD patient looks at their disease and the world around them.

What is your experience with dementia? What challenges are you facing right now? Have you read some interesting literature on AD?

I look forward to reading your stories as well.

Jojo

[Grannyfan]

Jojo, I am sorry for this bad news you've been given, but there is some relief in having a definite diagnosis and so much to be thankful for with the advances in treatment of Alzheimer's. I'm glad that your mother has shown the improvements that you describe. You sound like a wonderful daughter to make such big adjustments in your own life to care for your parents, and I wish you the very best.

My mother suffered from early-onset and passed away at 59. But this was nearly 40 years ago when the term "Alzheimer's" was hardly known. There were no drugs, no literature, no support groups, etc. Mama's disease progressed rapidly. The time between her diagnosis and death was less than six months. Her oldest sister, to whom she had always been more like a daughter, moved into her home and cared for her until her final hospitalization, which was the last seven weeks of her life. My aunt never left her side, day or night. Such extended hospital stays are unheard of today of course.

My experiences were quite different from yours, and I was not the primary caregiver, so I really don't have much practical day-to-day advice to pass along. Just remember to care for yourself during the months ahead. There will be great challenges, but you sound like you are aware of and prepared for them. Enjoy your time with your mother and accept her as she is at every stage. The primary caregiver is usually the one who bears the brunt not only of the physical work involved, but any anger or resentment shown by the one cared for. Don't feel guilty should your efforts ever seem to be unappreciated or if the day comes that you must have outside help or make other arrangements to provide the best care for her. It sounds trite, but take one day at a time.

May God bless you each and every day!

[Grannyfan]

Double post

[Holley Calmes]

Oh my! Where do I start? My Mom is very, very ill with some form of dementia, and although she has been to the family doctor who recommends evaluation and treatment (which would be in a hospital for a few weeks) my Dad just can't bring himself to take her in. He's done all the copious paperwork and has all the forms and documents. He just won't take her.

Mom's mom had also had dementia, and she was as placid and sweet as could be. My Mom, however, is a hellcat.

She flips out at least twice a day, has run away almost every day (just up the street.."going home") and attacks my Dad physically as well as verbally. His arms are covered with bruises, scratches and cuts from her nails. This is the woman who never in her life said "darn." Now she curses like a sailor.

She's beginning to quit eating much, never bathes, I don't know when her hair was last washed, and her clothes are in tatters. She's mean as a snake most of the time. It is like a 180 degree difference from her past life.

I have tried everything I know to get Dad to take her in. The last time we told her she was going to the doctor, she got so violent that she actually took off her bedroom slippers and started beating my brother over the head (which was pretty funny, actually) and cursed us all saying she wished we would all die and go straight to hell. Just because we were taking her to the doctor. Once she got to the doctor, she had a ball talking to the nurses about how she was still taking care of her parents (both of whom have been dead 40 and 20 years...)

One problem is my brother. He's Momma's boy, and he doesn't want to admit she's as bad off as she is. She does have moments when she isn't violent, and she can carry on a sort of conversation if you count asking the same question over and over a conversation. Then once every little while, she's almost normal. Whatever she has-I think it's advanced.

My brother thinks she just has "anxiety-like he does!" He thinks Dad provokes her, but that is so far from the truth! Dad does lose his patience every once and awhile, but he is the absolute soul of patience. I just think he can't let go and figures if she's evaluated she'll be required to live in a nursing home. It's that bad. They've been married 66 years.

I told my husband if I ever get like that, just shoot me.

I live 2 hours away from them, but I do see them every week and try to let Dad get away. Bringing in a nurse to spell him was a disaster because some strange woman was coming in to take over her house, so she thought. She needs medication, but she won't even take an aspirin because she thinks Dad is trying to poison her.

Oh-and there's more, but I think you get the picture. Pray for us, because I don't know what else to do at this point. I'm waiting for her to break a hip (she's starting to be unsteady on her feet) or for her to wander out the door while Dad's in the bathroom and get hit by a car.

What I worry about most is my Dad...that he'll cave with the pressure and have a stroke or heart attack, although he's incredibly healthy at 86. I babysat Mom 2 months ago so he could go play golf, and he broke 100-sometimes he breaks 90-at his age! I just can't make him budge, and I'm tired of trying.

[skatesindreams]

Don't hesitate to avail yourself of the helpful resources available.

Contact the Alzheimer's/Dementia Awareness Association in your area.
There are many groups that assist families and caregivers.
No one should feel alone; or without support, while they cope with this.

[judiz]

I helped care for my grandparents who had dementia and depression. From my experience, I beg you to make arrangements with someone to give you a break, caring for someone with dementia is so stressful, you will need a day off just for yourself. Be prepared to grow a thick skin, towards the end, my grandfather decided I was everyone who wronged him in his life and he yelled and tried to push me out of the apartment. Who knew a 90 year old man could be so strong? Make sure you have a support system, I was my mom's, I will never forget the look on her face the first time her father forgot who she was.

[skatesindreams]

Holley, could you contact the resources in your area on your father's behalf?
It's sounds as though the situation is serious enough to affect his health and safety, as well as your mother's.

An "intervention" might be necessary.

[BigB08822]

My bf and his family are dealing with this with his grandmother right now. I feel bad for them because no one wants to accept it. I know I am not a doctor but she is 80 something years old and her symptoms sound like classic symptoms of dementia. She is paranoid and thinks everyone is out to sue her and she thinks everyone she knows is involved in dealing drugs. The entire family wants to find a doctor who will say it was a bad reaction to medication. They will come around soon enough but I wish they would face the truth sooner rather than later.

[barbk]

JoJo -- I'd try and find the nearest Alzheimer's Association, as well as your local aging office (not sure what it is called in Canada). My strong suggestion would be to get some assistance in place sooner rather than later, so that she gets used to it. Some things that helped with my mom, who had some dementia as well as a lack of impulse control:
1. Adult Day Care. There was an adult day care center with daily programs; costs were income-based. If you lived close enough, they sent a van to pick you up and drop you off. Nurses, aides, meals, activities -- and a tremendous relief for my dad. Mom really liked it. I remember reading about one program in Queens NY that runs all night, because a lot of those with Alzheimer's are very active at night. Very active. Wish we'd had it.
2. Medic Alert Bracelet with contact info in case she wanders.
3. Medication Weekly Box, put somewhere she can't get it so she doesn't accidentally take more than she should.
4. Music from her twenties and thirties was very calming.

Holley -- I agree with skatesindreams. This is getting to the point where it could become dangerous for your dad. Can you call her doctor directly.

[victoriajh]

jojo
i read your post and imed thought of the book still alice- i think she does such a great job of speaking though the character to those of us who are fortunate enough not to have experienced this
jojo i am sorry to hear about your mum- you are such a caring and thoughtful daughter =) and I know that even if she cant say it your mum needs and appreciates you
hang in there!

[Holley Calmes]

Thank all of you so much for caring! I appreciate your concern more than you know. I have already instigated just about everything that's happened so far, but you're right. Perhaps it's time to call the family doctor. My brother, who doesn't think she even has dementia, is the executor of her physical legal directive. He goes beserk if I even suggest she HAS dementia of some sort much less letting her be admitted somewhere. Talk about denial! My Dad just needs to step up and do it, and I'm hoping he is coming to that point. But I think I will call the family doctor tomorrow. Thanks for the push!

[Japanfan]

Big hugs to Halley Colmes and Jo Jo.

Jo Jo, it's very honourable to take your mom into your home and care for her. And admirable. Caring for an elderly person with dementia at home has got to be even harder than caring for a young child. If you have a family of your own, the demands on you double.

On top of that, there is the heartbreak of observing what dementia does to a loved one and the possibility of that person declining to become only a shell of his/her former self. Hopefully, your mom's decline will be a slow one.

Aside from accessing available resources and getting outside support, the one thing that comes to mind is whether household adjustments need to be made for your mom to handle stairs and other physical challenges to an elderly person, such as getting into the bathtub? But, most likely you've thought of this already.

[Prancer]

But I think I will call the family doctor tomorrow. Thanks for the push!

Your mother sounds just like my mother-in-law; in fact, the entire situation sounds very familiar. My FIL also refused to do anything and some of my husband's siblings were in denial.

I would suggest that, if possible, you take your mother to see a geriatrician; IME, at least, geriatricians handle patients with dementia much better than family doctors or general internists.

[JasperBoy]

Jojo, I understand much of what you are going through. My ancient mother has dementia. She lives in an assisted living facility where they take very good care of her. I couldn't do it myself, it would kill me within a year.

Just this past week I noticed that she had trouble remembering the motions needed to get into a car. I have been waiting for this, since I have read that forgetting how to perform normal activities is a sign of advancing dementia.

One thing I would strongly suggest is that you make the new accommodations very secure. As dementia advances your mother will probably wander, especially at night. It will be easier for everyone if she cannot get out. Don't underestimate her ability to escape. My mother cannot move without her walker during the day, but at night she forgets that she needs one and heads off at a good clip, opening heavy doors that she finds in her way.

Few people want to admit that parent or spouse has dementia. They equate it to Losing Their Mind. It creeps up slowly and adjustments are made. Now you have a firm diagnosis and medication you can operate within more rational bounds.

By all means take advantage of every source of relief and information. Once your parents are in their new apartment make sure that a respite day is part of the routine. If you are lucky you will find someone who your Mom will like and trust...if only for a short time.

It's a sad and lonely time when one's parent leaves but the body is still present. There are support groups that will help. You are taking on a lot, take care of yourself, too.

[Meredith]

It's a sad and lonely time when one's parent leaves but the body is still present. There are support groups that will help. You are taking on a lot, take care of yourself, too.

How very true.

Mom was hospitalized right along with Dad. He had worn her out to the point that she took her phone off the hook, put their wills and trust documents on the coffee table and waited. Dad's heart was beginning to fail and Mom had pneumonia. She had promised him she would never send him "away." I wonder how many other elderly couples make this same promise, to their detriment and to the frustration of their families.

Because we lived 250 miles apart, I tried to visit every month or two. Dad's dementia had not made him mean (yet), and if he experienced hallucinations, he kept them to himself. Remembering some of his behaviors makes me laugh out loud, even today. "We lost Dad" took on a special meaning when I did take him out one afternoon and ... yes ... misplaced him.

Jojo and others who care for their aging parents, I admire your strength. I hope you arm yourselves with as many good memories as can.

[liv]

This is one of the most difficult things to deal with when faced with caring for aging parents. Your parent can sometimes disappear and become someone they would be horrified to have become. I work in long term care and i once treated a former high school principal who ran down the hallways naked with feces in his hand. You know that this formerly quiet, dignified gentleman would be horrified by this behaviour.

Always remember that it is the disease, not your parent, that is responsible for the possible violent, rude, forgetful, inappropriate behaviours that you could see.

Good luck to those of you dealing with this right now. You are very caring people and your parents are lucky to have you. It doesn't get easier, but knowing you did your best is all you can do.... and remember to talk to others in this situation. Support is always very important and can keep you sane when things become worse.

[Prancer]

Mom was hospitalized right along with Dad.

We were told that caregivers are often more in need of hospitalization than the dementia patients, and, indeed, I have heard many stories of dementia patients who are physically in pretty good shape who end up being placed in care because their caregivers have collapsed from exhaustion or are very ill from stress.

One thing that really helps with dementia patients is having a rigid schedule. Much of their "bad" behavior comes from stress; a schedule helps reduce their stress levels--and also keeps them from not sleeping, a common problem that makes their behavior much worse.

Another way to keep them calm is to try to never set them straight. Arguing with them creates stress. Agree and redirect.

And last but not least, redirecting them to things that remind them of happier times will often calm them down as well. Nothing makes my MIL happier than watching Shirley Temple movies or speaking French, two things that take her right back to her childhood.

[nursebetty]

Count me in also, my mom, stage 7. There is a book, "The 36-Hour Day, by Nancy L. Mace and Peter V. Rabins. Please google the alz. association, they have lots of information. There are meds to help with the paranoid thoughts and aggression please use them. Your family member is probably scared with everything that is happening, but can't control themselves. I read a post by a man who had alz. and was worried that he would hurt his wife. It's just a lot to take in. Good luck everyone, it is a brutal disease.

[judiz]

Something very important I forgot to mention, put a lock on the house door that your mom can't reach so she can't leave the house alone. My grandfather forgot what a key was but he was still able to unlock the door and walk out while everyone was asleep.

[Latte]

My Mother had it for the last few years before she died. It wasn't sudden, it came on her little by little. She started doing strange things and saying strange things but we dismissed it as just getting forgetful because she was getting old. You know, laughing with her about it. I guess I just didn't want to admit what was happening.
I took care of her along the last few years of her life and it isn't easy, but, all you can do is give them the best care you can, and try to be patient.
I keep telling myself that she took care of me when I was helpless and now it was my turn to take care of her.