Painful ramblings and emotional support?? (Dementia/parent related) (Long)

[Hunter's Moon]

Alzheimer's runs on my mothers side of the family. My mother's doctor agrees she has early-onset dementia and they are right now taking further steps to slow it down (first they're doing some memory tests and will do a brain scan at some point to check for mini-strokes as my grandmother began getting them at my mother's age and actually a little before). It took my father and I over a year to finally push her to go to the doctor. He did a small test in the office on her to determine if further testing was needed and he decided it was. (One question was the date and she said "January 9th, 1996" and then when she realized she said the wrong year she kind of chuckled and said "Oh, it's uhh 2011" [i don't remember the exact date we were at the doctor's. She got the month and day right, just way of with the year]). She can't remember a list of words said to her about 20 seconds before (she remembers at least 2 out of 3). I know this doesn't seem like much, but IRL, it goes way beyond this.

 

Whenever she misplaces something (very often) like keys, purse, money, credit card, phone, garage remote, you name it, she immediately freaks out and gets aggressive. Today at the DMV, I just had to bring in my birth certificate to get my permit and when you first walk in you have to go up to the main desk and tell them why you are there so they can give you a ticket and show you where to go. We walked up and I said I was there for my permit and the woman asked if we had filled out the app. My mother got really aggressive towards me and told me to tell her the situation (went down earlier that week and brought wrong birth certificate so I just needed to show them my notarized one) but she isn't the woman to tell, the ticket the woman gives us will direct us to who we need to speak with. I tell my mother that she isn't the right person and we need to get the ticket so while my mother is very loudly telling me to tell her the story and then gets loud with the woman because we already filled out the app., I had to grab the ticket from the woman and grab my mother and bring her with me. She has been to the DMV numerous times and knows the procedure, so this really caught me off guard.

 

When she freaks out in public over losing something or has an episode like today (well, she actually had two like that today) I don't feel embarrassed the way a daughter does when her mom does something "uncool". I feel embarrassed for my mother because it seems she can't keep her emotions in check.

 

She is very blunt and rude sometimes without noticing in public to people serving us (cashiers, waiters, etc.).

 

She also has no interest in discussing anything serious. I've tried getting her involved in so many ways with my schoolwork but after a day or two of it working, it falls apart. My father can't discuss bills with her without her blowing a gasket. All she wants to do is talk about what's on TV (Nancy Grace, The Royal Wedding) or Farmville or what she saw our neighbors doing outside today. We used to be the best of friends and I loved talking about those things with her but over the years, I've "grown" out of it. I feel like such a horrible daughter saying I "outgrew" my mother, but this is the only way to explain it. :crying:

 

I have a roof over my head, food to eat, clothes to wear, immediate medical attention when necessary, and everything I need education-wise as well. I feel like such a schmuck for having these frustrated, anger-filled, resentful feelings towards her.

 

My father has his own issues and I always had my mother to lean on. Now I have no one. I feel like she stopped parenting me years ago. She kind of just let me go. She had a lot on her plate involving my sister but even ever since she moved out she's still never "come back" to me. My father's issues hit me hard, but for some reason her issues are hitting me even harder. Probably because I spend all day with her and I was always closer to her.

 

I've gone through stages where I feel like I just won't care anymore. Yeah, I live under their roof and they provide for me but I'll just disconnect myself. Then I feel like a horrible daughter.

 

A lot of this is rambling and might not make sense as I don't have to composure right now to piece it together in a more fitting way.

 

If you got all the way through, thanks.

 

I'd appreciate any well wishes, prayers, suggestions, book recommendations, anything.

Edited April 30, 2011 by BeatleMania

[Jean in Newcastle]

:grouphug: I'm sorry. I remember when I was 15 and my mom was dealing with cancer. She was not emotionally available to me and wasn't physically able to do the normal "mom" things. I ended up doing all the cooking, cleaning as well as feeling like I had to be my mom's emotional confidante during that time. It was rough and I'm sure even rougher for you because you know that while they might be able to slow the disease, it doesn't sound like they can totally stop it or reverse it.

 

My advice? Remember that these outbursts are really the Alzheimer "talking" and not your mom. That's really hard to sort out but I'm sure she doesn't really want to be this way.

 

Do you have a trusted aunt or someone at church or in your community that you could have as a mentor? Not to take the place of your mom in your heart but to have some of the serious discussions. Don't forget to still involve your mom in your life in ways that she's able to be there for you.

 

And even though your dad has his own issues, I hope that you can lean on each other during this time.

 

(hugs) I think you disconnect because it hurts so much. I'm so sorry that your family is going through this. (hugs)

[Impish]

She lashes out in anger b/c she's afraid. Its a very common reaction to those with dementia.

 

Its difficult, as a family member to deal with. Even for ppl who aren't still living at home, as young as you are, it can be completely devestating. Treat yourself with kindness and paitence. You're mourning the loss of your mother. Who she is now is not who she was. That's a loss.

 

I'm sorry that your mom is ill, and that you are going through this. :grouphug:

[Rosie_0801]

Ah Sweetie. Humanity is complex. Caring for a parent is a tough job whatever your age, and it's absolutely normal to feel the emotions you feel. There are a lot of things in life that are unpleasant and negative, but still entirely normal. Normal is not a synonym for pleasant.

 

Now I don't have issues of dementia to deal with, but I grew out of my parents, intellectually, a long time ago. I've grown out of my hubby intellectually too. That is a horrible feeling and we're still working on patching that up.

 

It is hard when a parent checks out of parenting us before we are ready for it. My siblings and I all found mentors elsewhere, thank goodness. The hive is here to help, but I hope you can find what you need irl too.

 

:grouphug:

Rosie

[Plink]

:grouphug::grouphug::grouphug:

[pgr]

:grouphug:

 

It is so, so hard to lose your Mom when she's actually still living (but the person who was your Mom is going or gone).

 

I agree - try to be kind to yourself, and kind to her (and kind to your Dad). Things like this are so hard to deal with and bring up a lot of anger, I think, especially in that they can be harder to rationalize through than a different, physical (as opposed to mental) problem/tragedy.

 

Easier said than done - try to find someone you can lean on. If you pray, lean on God. You will get through this difficult, frightening time. I wish I had a better answer - maybe someone here will. Unfortunately, I can only say you're not alone, and I share your pain.

 

:grouphug:

[Hunter's Moon]

Thank you for the replies and understanding. Sometimes I just need to hear that my feelings are normal and valid.

:grouphug::grouphug::grouphug:

 

 

Do you have a trusted aunt or someone at church or in your community that you could have as a mentor? Not to take the place of your mom in your heart but to have some of the serious discussions. Don't forget to still involve your mom in your life in ways that she's able to be there for you.

 

Unfortunately, I don't. I have been meaning to visit a local UU church but keep putting it off....

[elfgivas]

:grouphug:

 

so hard. find a little joy each day. maybe try to do one nice thing for her each morning... because you are now the care-giver. try to find some time when you aren't with her, too....

 

:grouphug:

ann

[justamouse]

Alz is a horrid, wretched, disease that no only robs the victim, but the family, too. I know from experience.

 

Get to a therapist. Really. This is emotionally hard stuff.

[sparrow]

I'm dealing with my mother's Parkinson's related dementia. Today, she went missing. My father called and I found her more than a 1/2 mile from their house. She walked off in a huff because she feels like my dad is hiding her car keys (he's not, but he should). When I found her walking down the road, she was a bit unsteady, so I tried to help her further off the road. She cursed at me and hit me. That's not my mom :(. She had memory problems in the past because of the Parkinson's. The aggression and paranoia is new in the past couple of weeks.

 

The difference with me is that I'm 41. *I* don't feel grown up enough to deal with this. I don't know how you're doing it.

 

Feel free to pm me if you want to chat. :grouphug:

[kchara]

:grouphug::grouphug:

[G5052]

And unfortunately it may not get better :grouphug:.

 

As horrible as it sounds, you have to disconnect from taking this personally and realize that your mother is very ill. Her brain doesn't work right, and she can't really cope with the challenges of life in a normal way. Maybe they can do something about it, but maybe not. You may have to accept that your relationship with your mother may never go back to what it was.

 

Do the right thing by her, study what gets her riled up and avoid that. Don't expect anything back from her, be glad if it happens, but it may not. Realize that family relationships indeed can very messy when dementia is involved. There may be a lot of denial and misunderstandings for a long time. People with dementia cannot be reasoned with, will come unglued at the worst times, and are generally very hard to be around.

 

You need support, lots of support from those who understand this.

Edited April 30, 2011 by GVA

[lllll]

:grouphug: Praying for you, Stephanie.

[mom2l&j]

Dementia, in any form is very tough. I know it is REALLY hard to deal with. We just received a diagnosis of Lewy Body dementia for my husband's grandmother. We've been helping take care of her for years. I've gone thru the anger, the emotional detachment, the sadness, and now humor.

 

I think you can find some tremendous support in online forums if you can't find anyone locally. You do need to talk about it.

 

Also, if you ever feel as though you are in danger, don't hesitate to get immediate help. It's not your mom, it's the disease that is causing the anger and aggression.

[Mama Geek]

:grouphug:

 

You have gotten some good advice. One other thing that I might add would be to reach out to your older sister. You said you haven't been as close since she moved out, but maybe if you talk to her and let her know that you need her and why, she will be there for you. I know it can be hard for older siblings to realize their younger siblings are growing up, I am the older and have been guilty of it in the past. Just give her a chance.

[Hunter's Moon]

Thanks for all the advice everyone. I can't say how much it means to me

:grouphug:

 

I'm dealing with my mother's Parkinson's related dementia. Today, she went missing. My father called and I found her more than a 1/2 mile from their house. She walked off in a huff because she feels like my dad is hiding her car keys (he's not, but he should). When I found her walking down the road, she was a bit unsteady, so I tried to help her further off the road. She cursed at me and hit me. That's not my mom :(. She had memory problems in the past because of the Parkinson's. The aggression and paranoia is new in the past couple of weeks.

 

The difference with me is that I'm 41. *I* don't feel grown up enough to deal with this. I don't know how you're doing it.

 

Feel free to pm me if you want to chat. :grouphug:

 

I'm so sorry, I couldn't imagine that :grouphug:

 

I saw my grandmother do the same to my mother and her siblings a lot and it really took a toll on them.

 

And unfortunately it may not get better :grouphug:.

 

As horrible as it sounds, you have to disconnect from taking this personally and realize that your mother is very ill. Her brain doesn't work right, and she can't really cope with the challenges of life in a normal way. Maybe they can do something about it, but maybe not. You may have to accept that your relationship with your mother may never go back to what it was.

 

Do the right thing by her, study what gets her riled up and avoid that. Don't expect anything back from her, be glad if it happens, but it may not. Realize that family relationships indeed can very messy when dementia is involved. There may be a lot of denial and misunderstandings for a long time. People with dementia cannot be reasoned with, will come unglued at the worst times, and are generally very hard to be around.

 

You need support, lots of support from those who understand this.

 

Thank you. I've been thinking about buying her a new purse. Her purse now is just one large pocket with four little pockets. Two on the outside and two on the inside. That gives her lots of places to place and then lose an important item and make her scared. I think I'll have to find an easier purse for her to maneuver for when I'm not with her. When I am, I may just have to hold onto her keys and credit card and things. She knows she does this so wouldn't mind. I just haven't gone that far because it feels like a huge jump from helping her find her things to actually holding them. She can no longer do it alone and it's scary.

 

:grouphug: Praying for you, Stephanie.

 

Thank you, I appreciate it.

 

Dementia, in any form is very tough. I know it is REALLY hard to deal with. We just received a diagnosis of Lewy Body dementia for my husband's grandmother. We've been helping take care of her for years. I've gone thru the anger, the emotional detachment, the sadness, and now humor.

 

I think you can find some tremendous support in online forums if you can't find anyone locally. You do need to talk about it.

 

Also, if you ever feel as though you are in danger, don't hesitate to get immediate help. It's not your mom, it's the disease that is causing the anger and aggression.

 

I'm sorry. :grouphug:

 

I hadn't thought about online forums, either, thanks.

 

It hasn't gotten to the point of dangerous aggression yet, more like growling at me and saying things sometimes she doesn't realize are offensive, especially when she is upset about losing something.

 

:grouphug:

 

You have gotten some good advice. One other thing that I might add would be to reach out to your older sister. You said you haven't been as close since she moved out, but maybe if you talk to her and let her know that you need her and why, she will be there for you. I know it can be hard for older siblings to realize their younger siblings are growing up, I am the older and have been guilty of it in the past. Just give her a chance.

 

She moved out about 1 1/2 years ago and we are slowly rebuilding our relationship. It has been shaky ever since she realized she was too grown up for me when I was about 10. We're only 16 months apart, too.

 

We discuss both of my parents' issues a lot (not in a demeaning way, more of a "how can we deal") and she doesn't seem to realize how much she misses not living here. She always asks me how I do it, but I don't think she really understands how hard. She sees us at least once a week so we aren't completely disconnected. Just picking up the pieces at the moment.

 

She is one of those relationships that seems it will get better with age, I think.

[OLG]

:grouphug:

 

Been there...it is hard. When you now become the parent to your parent and at such a young age. Please investigate support groups - you need to be able to vent to others who completely understand. Please make time outside of the house for yourself too. So, so sorry you must walk this very difficult road. My prayers are with you, dear girl.

[cin]

And unfortunately it may not get better :grouphug:.

 

As horrible as it sounds, you have to disconnect from taking this personally and realize that your mother is very ill. Her brain doesn't work right, and she can't really cope with the challenges of life in a normal way.

 

 

 

This is how I've dealt with MIL's dementia and Alz. And how I've helped my girls to deal with gramma. If she lost a leg, we would accept the handicap. If she had cancer, we would accept the weakness and loss of hair. With dementia/Alz, part of her brain is 'gone' and we have to accept what comes with that as a symptom of the disease and not take it personally. As hard as it may be.

 

Another thing that I've learned through some of my friends is the word 'Filter'. They use to be able to Filter their words/thoughts/things they say, but their Filter is broken. Hence some of the mean words and tantrums.

 

It is not easy to watch, just as it is not easy to watch a loved one waste away physically. But I beleive that Alz and dementia are harder sometimes, because it affects more, emotionally. :grouphug: :grouphug:

[lllll]

...

[Ester Maria]

:grouphug::grouphug::grouphug:

 

You do not have to be alone in this. Seek help, support groups, try to connect with your father if you can, anything to make it easier for you. Your feelings are normal, natural and valid and it is terrible to begin "losing" a person while they are still there, but it does not have to be terribly lonely in addition to all the regular difficulties and necessary emotional disconnect in such a situation.

 

Keep on keeping on. Be kind and as understanding as you can to her, but extend the same grace to yourself - you are so young and going through something so difficult. It is alright to feel the way you feel, to attempt to disconnect and to do what you can to make it easier on you.

[Mejane]

Please contact your local chapter of the Alzheimer's Association. They have support groups for caregivers, and can help with services you may need at some point. I'd also encourage you to read the book The 36-hour Day. It explains what's going on and how to deal with caring for someone with cognitive impairment.

 

I agree your mom is lashing out in fear and anger at her condition. Don't take it personally. I know it's hard not to, but don't. You're a good daughter, Stephanie. :grouphug:

[6packofun]

YES. I have a copy of this book, tigersgrowl, and I've been holding onto it since dh's grandmother passsed away (from Alz.) so that I could give it to someone. Let me send it to you! PM me.

 

Please know that there ARE medications that will really, really help with the severe frustration and agressive reactions that your mom is having. Be an advocate for your mom by helping your dad explain ALL symptoms to her doctors. When I was caring for my dh's grandmother, the Alz. Association's support forums helped keep me sane on some days! They were very helpful and have a lot of good information. I discovered medications to ask grandmother's doctor about, learned the right questions to ask at her appointments, found out what to expect at each stage.

[Hunter's Moon]

I had to get rid of some smilies so I could put some in.

 

:grouphug: Been there...it is hard. When you now become the parent to your parent and at such a young age. Please investigate support groups - you need to be able to vent to others who completely understand. Please make time outside of the house for yourself too. So, so sorry you must walk this very difficult road. My prayers are with you, dear girl.

 

:grouphug:

 

This is how I've dealt with MIL's dementia and Alz. And how I've helped my girls to deal with gramma. If she lost a leg, we would accept the handicap. If she had cancer, we would accept the weakness and loss of hair. With dementia/Alz, part of her brain is 'gone' and we have to accept what comes with that as a symptom of the disease and not take it personally. As hard as it may be.

 

Another thing that I've learned through some of my friends is the word 'Filter'. They use to be able to Filter their words/thoughts/things they say, but their Filter is broken. Hence some of the mean words and tantrums.

 

It is not easy to watch, just as it is not easy to watch a loved one waste away physically. But I beleive that Alz and dementia are harder sometimes, because it affects more, emotionally. :grouphug:

 

:grouphug:

 

Stephanie, is your mother eligible for any kind of services? Maybe someone to come in and help for a set time every day or something?

 

There is an elderly couple down the road from us who both have problems. The woman has Alz and the man just had a stroke (not debilitating). There is some kind of worker (a woman about 50yo) who comes to help them, M-F, for a good chunk of the day. If you could find something like that, at least you would get a break from it for a short while.

 

Also, someone like that has often seen most of what you're seeing many times over, and they can tell you what's coming next so you can mentally steel yourself for it. They could also give you many ideas on how to handle the different behaviors.

 

And I have no idea how to find someone to help. Maybe somebody here knows??

 

I don't think she is bad enough where those services would be available, yet. Once the tests are all done, maybe we can see about some services. The doctor sees the signs but since there is no way to really show whether someone has dementia or not, there isn't too much that can be done. She passed her "test" yesterday (mostly physical like crumbling paper and throwing it on the floor and stuff) but failed the one the doctor gave her when I was with her and with how long it has been going on and family history, he believes her. He said even if she passes these tests (she has a 3-4 hour test coming up that will be more intense then the previous one) and the brain scan shows no signs of strokes or a tumor, they still have to treat her for dementia which means meds. that will slow the progression and hopefully services of some kind. They'll also search for other possible diseases that cause dementia, like Parkinson's and see if those can be treated as well.

 

:grouphug::grouphug:

 

You do not have to be alone in this. Seek help, support groups, try to connect with your father if you can, anything to make it easier for you. Your feelings are normal, natural and valid and it is terrible to begin "losing" a person while they are still there, but it does not have to be terribly lonely in addition to all the regular difficulties and necessary emotional disconnect in such a situation.

 

Keep on keeping on. Be kind and as understanding as you can to her, but extend the same grace to yourself - you are so young and going through something so difficult. It is alright to feel the way you feel, to attempt to disconnect and to do what you can to make it easier on you.

 

Thank you for the advice :grouphug:

 

Please contact your local chapter of the Alzheimer's Association. They have support groups for caregivers, and can help with services you may need at some point. I'd also encourage you to read the book The 36-hour Day. It explains what's going on and how to deal with caring for someone with cognitive impairment.

 

I agree your mom is lashing out in fear and anger at her condition. Don't take it personally. I know it's hard not to, but don't. You're a good daughter, Stephanie. :grouphug:

 

Thank you. It means a lot.

 

I was recommended that book before but couldn't find it at the library. I'll check the state library loan to see if they have it.

 

I looked into my state's Alzheimer's Association and they have lots of resources for the state and in my area. They have a support group for caregivers. Their site is a wealth of info., too. Thanks for suggesting it.

[Sebastian (a lady)]

Oh hugs. :grouphug::grouphug::grouphug:

 

I remember reading something about having kids with autism and Asperger's that mentioned that parents need to give themselves permission to grieve the loss of the child they thought they were going to have.

 

It seems like watching your parent loose their sense of who they were would cause a similar grief.

 

Try to enjoy what time and experiences you can with your mom. Even if they are the experiences that you wish you were sharing.

 

I wonder if the outburts and anger from her are because she is scared or depressed.

 

I would ask her doctor for recommendations for family support groups for those caring for family members with Alzheimer's. Or you might find listings for a group like this from the local hospital.

[Kim in Appalachia]

:grouphug:

 

I hope you are able to find someone IRL to lean on. You need someone to talk to, and someone to support you. :grouphug: I can't imagine how hard this is at your age.

[Hunter's Moon]

YES. I have a copy of this book, tigersgrowl, and I've been holding onto it since dh's grandmother passsed away (from Alz.) so that I could give it to someone. Let me send it to you! PM me.

 

Please know that there ARE medications that will really, really help with the severe frustration and agressive reactions that your mom is having. Be an advocate for your mom by helping your dad explain ALL symptoms to her doctors. When I was caring for my dh's grandmother, the Alz. Association's support forums helped keep me sane on some days! They were very helpful and have a lot of good information. I discovered medications to ask grandmother's doctor about, learned the right questions to ask at her appointments, found out what to expect at each stage.

 

That is so amazing of you, I really appreciate it! :grouphug::grouphug::grouphug:

 

PM'ing you!

[Sebastian (a lady)]

Does anyone else remember the comic strip that dealt with dementia a few years ago? I can't remember the name of the strip, just that the grandmother developed Alzheimer's and that the strip worked through the developing symptoms and the family learning to cope with the changes.

 

I know that when I read a strip about a military person or family, it can describe just what I've been feeling but couldn't put words to.

 

Update: I think I found it. The strip was Crankshaft and it looks like there were two series a few years apart. They are collected in the book Safe Return Home.

 

The only other thought I have at the moment is the ending of a story I once heard about a university president whose wife suffered from dementia. He was on the top of his profession, but had lost his wife to the disease. He visited her daily, even though she didn't recognize him. Someone once asked him why he bothered, since she didn't even know who he was. He looked at the other man and said that it was because he knew who she was.

 

When we love those who aren't capable of showing us love, be they older parents or needy children, we do it because we know who they are.

 

Hugs again.

Edited April 30, 2011 by Sebastian (a lady)

[Hunter's Moon]

Does anyone else remember the comic strip that dealt with dementia a few years ago? I can't remember the name of the strip, just that the grandmother developed Alzheimer's and that the strip worked through the developing symptoms and the family learning to cope with the changes.

 

I know that when I read a strip about a military person or family, it can describe just what I've been feeling but couldn't put words to.

 

 

That'd be interesting to read.

 

I'd be interested if anyone knows the name :bigear:

[Hunter's Moon]

Does anyone else remember the comic strip that dealt with dementia a few years ago? I can't remember the name of the strip, just that the grandmother developed Alzheimer's and that the strip worked through the developing symptoms and the family learning to cope with the changes.

 

I know that when I read a strip about a military person or family, it can describe just what I've been feeling but couldn't put words to.

 

Update: I think I found it. The strip was Crankshaft and it looks like there were two series a few years apart. They are collected in the book Safe Return Home.

 

The only other thought I have at the moment is the ending of a story I once heard about a university president whose wife suffered from dementia. He was on the top of his profession, but had lost his wife to the disease. He visited her daily, even though she didn't recognize him. Someone once asked him why he bothered, since she didn't even know who he was. He looked at the other man and said that it was because he knew who she was.

 

When we love those who aren't capable of showing us love, be they older parents or needy children, we do it because we know who they are.

 

Hugs again.

 

Thank you, looking into it.

 

A book (and movie) I love is the Notebook.

 

Thank you for reminding me that I know who she is.

[Teachin'Mine]

I'm praying for you and your family Stephanie.

 

:grouphug::grouphug::grouphug:

 

Don't know if there's a Catholic church near you, or if you'd even be interested, but tomorrow is Divine Mercy Sunday and an especially beautiful mass.