It Feels Good To Talk About It

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So frustrated

I called my Mom last night to remind her that I would pick her up for a Dr apt and I was also going to take her to where I work before my retirement on Monday. I called her this morning and she was not at home. I called one of her friends and she said she had gone to take another friend shopping.the friend called her and she came home. I took her to my work we then went to her Dr apt. She complained the whole time about having to wait. her apt was at 940. Apparently the Dr was running late. at 1030 she abruptly gets up and yells and screams and says she is leaving. The doctors office calls and is changing her medication one to help with her dementia. My mom uses the excuse she is 91. This statement has only come in recent weeks come to find out my sister tells her well remember mom your 91. My sister never says she has dementia. I can only believe my sister is in denial about this situation.

My Mom

I took her to a musical program at the independent living place. She enjoyed herself but will not consider this idea.  She still has her homeless friend stay overnight occasionally drives me nuts as he isn’t being honest with himself or Mom.

She is having such a memory problem and a person who used to be a very good accountant can’t balance her checkbook. I am still looking for answers. I finally decided that after the first of the I will go over and and start weeding out paperwork that is no longer needed.  If it isn’t needed and is gone maybe she won’t be so confused.

We all need a simpler life and I that is why I pay all my bills online and balance my checkbook online. Less paper hanging around. Her junk mail is out of control. Not sure what I am going to do about that problem.

Carla

My journey with Mom

I finally got my Mom to agree to visit the independent living on Saturday for a concert and lunch. Now is where the frustration comes in I called her and told her the roads were going to get nasty out. I told her to drive carefully and she told me to quit trying to run her life. She told she has been driving longer than I have.  I told her that I was concerned as I didn”t want her to get into accident.

My Journey with my Mom

My Moms dementia started to get really bad this year. Two years go my mother was hit in church parking lot and she suffered a brain bleed and concussion. Her memory started to get worse after that. I and my husband are her sole caregivers. She is 91. She lives alone in her home and still drives for how long I don’t know.
My only sibling lives 900 miles from me so is not much help even when she comes. This past year has been an eye opener for me. She started getting junk mail from people who tell her that her social security is going to be taken and if she doesn’t send a donation to help them. I finally had her mail forwarded to my house. She has a “friend” who is 61 and lives out of his car with his dog. She feels sorry for him and lets him sleep on the couch when it gets cold. She loans him money and not sure whether he pays it back. He gets 1700.00 in disabilty he told my husband far more than moms social security and her civil service retirement. He is a convicted felon and has been evicted from residences he has rented this year. I have been to the police, lawyer and not much help or advice. I think she needs to be in an independent living situation where she is around people her own age. She will not even agree to look. My sister wants to preserve the estate. I do have durable power of attorney. I don’t know who to talk to and mom is not someone you can reason with. My husband feels I need to let things just happen. I don’t want someone taking advantage of her. I need advice for me I am 67 and will retire at the end of the year. An ideas to help my journey

outnumbered 2 to 1

Both my parents have dementia. Almost certain it had been brewing for some time, but they covered well for each other until the signs were obvious. It was completely unearthed when my brother (only sibling) was visiting and found stacks of foreclosure notices in their house. Being that I only lived a few miles away I agreed to look into it and anything else that needed attention……now 2 years later regret getting involved. It had only been a month since my husband of 18 years had moved out and filed for divorce. I had no other family, a spouse and the only sibling I had lived 3 1/2 hours away. I have 3 kids of my own, a full-time job as a nurse and now my parents future.

Fast forward…..the dementia worsened, both with varying degrees, and after having a part-time care taker for a while, they moved into an assisted living facility with a dementia care program. My dad wouldn’t shower or change his clothes anymore and would physically fight anyone who tried to get him to do it. To this day, my mom still sees him as the strong capable man she married. Having both parents with dementia, not safe at home and no one to help me figure it out I was finally able to know they were safe and cared for 24 hours a day. I took on all their financial responsibilities. It took me a year to get their house out of foreclosure and 6 months to pay settle with debt collectors. My parents had life insurance policies, wills, annuities, long-term care policies but I didn’t know about any of these as their dementia had taken them past the part where they could remember to tell me. The first 6 weeks or so at the assisted living facility were hell. They called me several times a day yelling at me. After a while they settled in and things became a little easier.

But here is why I am on this site. The guilt is eating me alive and I just want to run away. I wish I had never gotten involved and that they were still in their own home somehow. I want to concentrate on rebuilding my life after a painful divorce and I know my mom in her right state of mind would never have wished this  on me. She calls me numerous times a day. Sometimes it’s just to talk other times she is telling me that I don’t love her and asks why I am doing this to them? I would love to be able to separate them and have mom move in with me and keep dad there since he needs so much hands on care but they need each other. I don’t answer her calls for the most part because it’s usually some kind of sabotage. If I call her back she doesn’t remember calling me and thinks it’s just me giving her a friendly call. I don’t visit very often either because it’s so draining and difficult to leave. I feel like having a nervous breakdown right now. No matter what I do or have tried to do it isn’t enough. I tried to take care of the situation and feel like it’s collapsed on me. I want out of my responsibility but of course that’s not an option. Someone please give me some advice.

 

Finding Joy in the Journey

Three years ago when we realized my widowed father was spending too much time alone, my siblings agreed to accept my invitation for Dad to live with me and my husband, Ron.   We both worked so Dad was still at home alone for part of the day but we were together for meals, and managing the three of us in one house was far easier and less expensive than in two.   I’d sometimes come home to find Dad had run the vacuum cleaner for me or emptied the dishwasher.  He didn’t know where to put things so they’d be stacked around the kitchen, but it was therapeutic for him to do something productive and I didn’t mind.
Two years ago, at a time when we realized Dad’s mental health was starting to decline, my husband was laid off from his job.  Being home 24-7, while looking for work, put him in the role of Dad’s daily companion.  They’d often go to Dad’s favorite diner for lunch.  Dad would ride along when Ron did errands.  Ron took Dad for all his doctors appointment.  And I’d come home from work in the evening to find them watching one ball game or another on TV. And as Dad’s advanced age became more apparent with difficulty dressing, incontinence, and signs of dementia, Ron added the role of care-giver to his daily routine.
Dad is now 95.  He’s currently in a rehab facility “learning” to walk following an apparent Transient Ischemic Attack (mini-stroke).  He’s making progress . . . and making the nurses and aides laugh with his silly one-liners.  They’ve all said they’ll miss him when he’s discharged, hopefully within the next week.  I can’t wait to get him home!  While he’s doing better, Dad still gets confused as to where he is and why.   Ron is with him most of the day, from mid-morning until he’s settled into bed for the evening.   I visit every day before or after work, as my schedule dictates, and I’m there all day on the days I don’t work.   We watch TV, practice his exercises, talk about my job and his cat.  He naps while Ron and I read.  Still, we’re together– and I do this because I know there will come a day when we won’t be together, and I want to soak up as much of him as I can while I can.
Don’t get me wrong– it’ isn’t always easy.  Dad sometimes argues with us about the (imaginary) bugs that have infested his bedroom.  We’ve paid exterminators to treat the house just to appease Dad’s mind.   He’s declared that chicken and fish are poison so often refuses to eat what I cook.   There is no temperature at which the house isn’t either too warm or too cold.  And he feels we should help him get his drivers license reinstated and buy a car so he can get a job.   But I’ve made a specific decision to let those things be the little things of life, and I choose to focus on the big things:  He still knows who he is and who we are.  He still enjoys a drive in the country and often recognizes where we  are, especially if we venture to his home-town.  He still loves ice cream.  And he still teases me, and then winks at Ron to let him know it’s all in fun.
Someone once gave me a wall plaque that reads, “Blessed is he who finds joy in the journey”.  It isn’t always easy, but it’s a choice I make every morning when I open my eyes, that today I will find joy in the journey Dad is taking us on.  Some day I may find myself in Dad’s shoes, and I hope I’m setting an example to my children as to how they, too, can find joy in life’s journeys.

First Mother’s Day Without Mom

Well, I made it through mom’s birthday on May 7th and Mother’s Day.  I bought her the dozen peach colored roses that I always did on her birthday, and kept them on my kitchen table. I hope she knew that I did that.  They made me smile every time I looked at them.

I visited her grave on Mother’s Day and left her a fresh peach rose.  It wasn’t as bad as I thought it would be, probably because I cry for her every day at some point, so mom’s day wasn’t so different.  I cried at her grave, but I also cry driving the car or cooking a meal.  She gets to me at least once a day.  But I made it through my first Mother’s Day without her, which I thought would be impossible way back when.  It’s amazing what we can do when we have to.

What I’m Most Glad About

It’s hard to believe that my dad will be gone a year next month.  I think about him and my mom everyday.  People ask me what I most regret or what I’m most glad about.  I don’t have regrets, I’m glad to say.  I sleep well with the way I handled things with my parents in their final years.  What I’m most glad about is how much I tried and succeeded to stay connected with them up until the very end.  Staying connected with your loved one who can no longer remember you, no longer speak, etc., can be achieved using the five senses.  If they can’t speak or hear, can they touch?  Can they smell?  Can they taste?  A familiar photo, song, perfume, texture or fabric…these can help you to connect with the person you love.  I hope you’ll try it!

Finding it so hard

Hi everyone
I have a father in law with Alzheimer’s – he cannot remember me and he doesn’t know our 18month old daughter. My mum in law has Parkinson’s and dementia and is very demanding (she always was but it has gotten worse with the dementia). We hardly see my husband, his work is suffering – I am trying so hard to be supportive – I have never mentioned that I sometimes resent the time he has lost with our baby. I know its his parents and it is so hard for him but I’m struggling with just how unreasonable some of his mums demands have been of late. I feel lonely and stuck between a rock and a hard place but I love my husband and have to be there for him – so hard!

I’m Back

It’s been really tough to deal with this site since mom and dad died, but I feel like I am finally able to work on helping people again.  After they died, I couldn’t think about dementia and I had a tough time looking at their pictures.  But it’s been since May/June, and enough time has now passed.  I will continue to post new articles and share what I learn about dementia through interviews and research.

  Many people contact me with questions about caregiving, etc., and I am happy to help.  Please contact me at this site if I can help you in any way to get through this tough time.  As one whos has been there,  I empathize with your situation, and am happy to share what I can to help you through.   DMDEC

Both Parents with Dementia

Came to this site because I just don’t know where to turn. Dad is 85, has had Parkinsons and intermittant dementia for 8 years. My mom, 80, who has been his caregiver and my best friend, was diagnosed last year with Alzheimers. I am lucky they are both in their home with a 24/7 caregiver, but I am still there everyday, micro-managing and dealing with those crisis’ that come up almost daily.

I went to a support group run by the Alzheimer’s Association, but it is a totally different situation when it is both of your parents vs when it is your spouse. I really need to talk to others who are in my situation…is it so rare when both parents have dementia?   Alzheimers Association could not recommend anything or any group for me. I really need to vent and hear of others who are in this situation. Any feedback would be appreciated.

Helping Mom

My mother has not been diagnosed with Dementia, though we all suspect she has this horrible condition.  She is not herself.  My mother was a woman of high moral values, conservative, skeptical of the world.  Now her morals and values have changed.  She uses swear words, when she never did this before.  She sees strangers as friends instead of treating them as strangers.  When she is traveling, she will strike up conversations with homeless people, stating that she is not in any danger.  She does not understand the value of money anymore.  She can go through $500 a week, stating that she is just doing her best to “make people happy.”  However, towards us, she is apathetic.  My father is beside himself, because they live on a fixed income, and they need to keep the money for bills.  My mother gets into arguments over the strangest things.  And, I have not been able to have a decent conversation with her for over a year.  Every time, the conversation ends in an argument.  She thinks that all men are “hot” for her; she is brutal to my father, because he is elderly as well and cannot physically do what he used to do.  I know we need to get her evaluated, but I don’t know how to go about doing this.  She is VERY afraid that she is “crazy.”

Mom on Christmas

Last April I put my Mom into a dementia care facility. I could not take care of her

being self employed  and working 60 hrs a week. It was the hardest thing I ever had to do. She has vascular dementia and

is considered higher functioning in that place. It is considered to be a good place. Her room mate is also higher functioning as there is quite a mix of different levels of functioning.  She went against her will and is not mad with me now but is unhappy. They suggested I take her there and leave which is what I had to do. She misses her life

and wants things on her terms although she can not function or live alone. On Christmas she wanted to come home with me for a couple days and I would have loved to have her but I could not take her because I knew she would not go back

the facility. I took her out to brunch and for a drive but then took her back. I invented a story about my furnace being fixed but she still insisted on going to my place. I told her I was leaving and she told me not to return if I didn’t take her. She doesn’t mean that of course. It was still heartbreaking for me. I am still trying to shake it off.

The End

The last post I gave was a few days before Mom died.  My wife and I had just made arrangments with her doctor for Hospice to start coming to our home. The morning they were to start she had passed away in the early morning hours. At my Mothers wake I met a lot of wonderful people that they themselves had been through or are going through the same situation. Many blogs ask the same question we asked over the last few years.” What should we do”    Like most families I have two brothers. One who never visited Mom unless he needed Money. The other who blew every thing off saying she,s in a retirement home and oh well!!. It got to the point every time I visited Mom she was either in Bed or sleeping in a chair.  I don,t think she could function with other people at the end. Finally my wife said that,s it where taking her in.  We had her in our Home for 13 months, during that time my one brother stepped up and watched her for aprox 2 months on and off and It gave us a much needed break. Was it rough “Yes” This consumes you. It,s like a young mother with a child. It,s a 24/7 obligation.  My wife,s a Saint , she grew up helping her mother  taking care of her blind grandma who also had cancer. She also cared for her mother and father for 14 yrs. But they were different the never had what Mom had.  At Mom,s wake the few friends she had that are still alive appear to be ready for someone in there life,s to step up and take control.  If you watch the news theres a whole bunch of bad things happening to people. But at the same time these things are motivating  the “Good” in all of us. And Good will allways triumph.  So if your on the fence with a loved one all I can say is step up and do the best you can and get as much support as possible. You can do it We did. Good Luck

LN

Still Tough to Think About

Hi.  It’s been almost 7 months since dad died, and 6 since we lost mom.  It’s still tough to think about them without crying.  Dementia is a very painful subject to discuss.  My hope is that the articles I’ve written about caregiving and dementia continue to be helpful to people who visit DMDEC.  My intention is to continue adding articles that I think would be helpful to people.  I can’t really add to the blog about my daily experiences, ’cause obviously that part of my journey is over.  I hope you’ll continue to tell your stories.  People find them helpful.  They really do!

One of these days I”m going to turn what I’ve learned into to a small handbook for people new to dementia.  It’s something I aspire to do, but just not now.  Someday, the topic will be less painful and then I’ll move forward.

Perplexed

I would like some suggestions, if anyone has any.  I am perplexed as to what to do with my mom.  She is 88.  Due to family issues, I put my mom in a small home in a subdivision that cares for dementia/alzheimer’s residents.  There are 2-3 caregivers for 8 residents.  My mom has never been social and always wants to be around family.  She knows she is somewhere that is not with family.  Should I move her in with a family member that says she wants to care for her or leave her there so I can care for her.  She is at a point where she can’t remember from one second to the next, but there are those moments that she can remember things.  The house caregiver says she wants to be with me and asks where I am all the time.  He says he tries to redirect her, but she continues to ask where I am and why did I leave her there. He said she cries and many times goes back to bed during the day.   She has been there for 3 months.  Should I persevere or bring her home.

The End is Almost Here

Like others that post to this site, it,s not a happy ending. Mom has been in diapers[pull-ups] for 2 months.  Progressively getting worst were she uses them all the time.  How this woman continues is beyond me. She never sleeps, she lays down for 10 minutes and she,s back up.  I take our dog out at night and she was always in the window looking out at us.  Wife contacted the doctor about home care last week and is calling in the AM to upgrade it to hospice. Mom,s has been getting weaker & Weaker. Not eating much at all. Say,s she,s hungry than takes a bit and say,s she,s full.  Today I and the wife were sitting in the kitchen and she looked in Mom,s bedroom and Mom was slumped over the side of her chair. We tried to lift mom out of the chair but she was dead weight. Called our son who lives close by and got her into bed.   Mom has a DNR so we hope she makes it until hospice arrives. We moved her bed so she can look out the window and watch TV. I doubt mom will ever get out of bed again. One of my wife,s girl friends called and asked if she could come over and sit with us. Wow did that make our day. Will post again when and if it ends!!!!!

LN

Weepy

It’s been almost two months since mom’s gone and three since dad passed.  I still find myself weeping out of the blue—driving, in the grocery store…whatever.  Any time I think of them, I burst out crying.  My brother visited their graves yesterday.  I can’t even think about doing that right now.  I can’t bear it.

The one thing that makes me feel better every time I cry is remembering what they were like  for the past several years:  dad constantly in pain, depressed that he can’t see, unable to remember anything or anybody (except those closest to him), and mom not talking, not walking, not smiling much…just sitting in a chair with her feet up looking at the wall.  They were both so ready to die.  I was ready too…or so I thought.  I don’t think you’re ever really ready to lose the ones you love.

If you still have your loved one with you—look into their eyes and tell them you are there and that you love them.  Do it now.  TODAY!!!

Road Trip

It’s been a while since I’ve posted but I wanted to share an update.  Mom is getting worse.  She told Daddy she was leaving last week and packed the car with random items only her brain knew the ryme or reason for.  Unfortunately in his burned out frustration of being her sole caregiver he let her drive off in the car.  Thankfully they have OnStar and I was able to get an operater to call the car to talk to Mom.  The operator stayed on the line & listened in while I tried to ask Mom where she was.  Of course she can’t really tell me as her brain just can’t get out the words she is trying to say.  It’s usually a bunch of gibberish.  Thankfully again, she had not gone that far & had turned around and was back home in 15 minutes or so.  I can’t begin to tell you how upset my brother & I were that my Dad let her go.  He doesn’t comprehend how tragic that could’ve been.  Needless to say we told him she can no longer have any keys to anything.  Since she also has the problem of picking things up & putting them down & not remembering where she puts them.  Try telling that to the Direct TV people of why you haven’t paid the bill…..lol  That actually happened she picked it up & my Dad found it a month later past due.

Well after diverting that disaster we get a message this past Saturday from Daddy saying Mama is going on her trip & he is going with her this time.  We were like OK at least he is drving not her.  Well she packed the car again and they eventually came down South where we live.  My brother & sister-in-law had dinner with them as I already had family plans with my in-laws that evening.  All though it was in the car as they decided to bring their younger dog with them & couldn’t go in a restaurant to eat.  The downside to having pets is not being able to go to far from home, I know this all too well as I have several.  I pleaded with my brother to try & talk them into getting a hotel for the night as they got down here around 5 & didn’t need to drive back home at night.  They did and we were releaved of that.  I went & had breakfast with them the next day at their hotel.  I took pictures of their car of the randomness of the items my mother had packed.  It was the oddest thing I had ever seen.  Pillows from the couch, pictures from the wall, an old electric knife from the 70’s, clothes, a clock off the wall, glass trays, a silver tray, a small bird feeder from the yard, an empty cooler, a bag with odds & ends in it, my dads laptop and even the router.  I’m not sure if he put that in there or her.  The oddity of it was bizzare.  The visit was bittersweet, getting to see my parents was wonderful, but the reality of her dementia is heartbreaking.  She talked about someone being in the house & taking things off the walls when it was her that did that.  Her conversations are hard to follow as like I said her brain can’t always think of the words she is trying to say.  She has alot of dilusions that are difficult to deal with but we just nod and say I don’t know.  What do you say to someone in this situation?  Every once in a while it dawns on me what she means but mostly I am lost in her lost translation of things.  Well they set off for home around lunch & I felt confident they would get there.  I called later in the day to make sure they got home ok to find after being home only an hour she was packing the car to leave again.  Obviously she had forgotten they had been anywhere.  She has made the statement several times she is going home even though we try & tell her You are home Mama.  She just says no I’m Not.  My Dad is so frustrated & give out he just didn’t know what to do.  I called my brother & he told my Dad to take her to the hospital & see if they will have her evaluated & maybe admitted.  Well he did but they only ran blood test and let them go back home.  Living in such a small town I guess their hospital couldn’t really do much with a dementia patient.  I live in a bigger city & if taken to the hospital here he could’ve requested a 10-13 on her.  Which is a psyc evaluation & they could’ve held her until they spoke with her doctor.  Well needless to say this has made us come face to face with the reality that it’s time to find Mama a place that can care for her.  They saw their GP on Monday & he gave my Dad a list of care homes in their area.  They went by one of them & got the paperwork for the doctor to complete.  This will be one of the hardest things to do is place my Mom in a home.  But to extend my Dads life & sanity a little longer & her safety it’s time to do so.  Please pray for me & my family as we start this journey.  Sorry to write so much just need to get it out & it’s been a while.

Life Without Mom and Dad

It’s been two months since dad died, and one month since we lost mom.  Life is so different without them.  For four years, my whole life was about making sure they were ok and getting the care they needed.  Losing them has left one giant whole in my heart that won’t ever be filled.  What am I going to do with my life now?  I have time to figure it out, and I will take that time.  I am not ready yet to move on completely.  I still cry for them every day.

I can say without hesitation that I HAVE NO REGRETS.  I did what I had to do, I said what had to be said, and my parents died in my arms knowing they were loved until the end. 

For anyone out there with a loved one who is losing the dementia battle, hang in there with them.  You won’t regret it.  If your loved one still understands what you say, please try to resolve issues with them now.  Don’t wait. Once they lose their memories, you won’t be able to talk to them.  If they are too far gone, take lots of pictures, videos if you can.  I treasure the videos I have of my dad singing and of my mom smiling at me.  Do everything you can to find a connection with them while they are here.  Once they are gone, that’s it.  Cherish your time with them.  It will go by very quickly.

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