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Originally posted by: jfkoc
Somebody will get on board shortly and give you some reading ideas.
My suggestion would be to read them "together" with your mom. She need any respit you can give her on a regular basis. It would be a great Christmas gift!!!
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Joined: 1/14/2015
Posts: 40463
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Originally posted by: Marp
Hello Spouse & Partner Caregivers.
I hope you can help me with something.
My father, 78 years old, has Alzheimer's (or some other dementia). My mother, who is 71 yrs old, is his primary caregiver.
My mom is having a real hard time dealing w/the behaviors - particularly the stubbornnes, the insistence on being right, the critical nature...
It hurts her & she doesn't see the behaviors as part of the disease. Thus, she doesn't want to make much effort to accommodate them.
Also, because my dad demands so much attention these days, she has lost a lot of her life. I believe she is resentful of my dad because he seems to be taking away her life.
I have talked w/her about taking care of herself & have tried to encourage her to take advantage of respite opportunities. She is reluctant. She is so angry w/him & hurt by him that she doesn't want to try.
This bothers me a lot & I hate to see both her & my dad so unhappy.
Although I think my dad is oblivious to the effect he has on her.
I just don't know what to do. I have been in touch with the ALZ association, but there recommendations, of course, assume the primary caregiver feels compelled to try.
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Originally posted by: Rkg
Marp, Welcome, First let me say it's wonderful that you are looking for answers to help smooth your DD's journey. I am sorry you haven't gotten a lot of answers yet. But Sundays tend to be quite here and with the holidays the whole week may be quite. Anyway, as you know, your Dm's feelings of resentment are not realistic but may I say, understandable. I completely understand hating this disease but, resenting a person because they have it? hmmmmmm, in my world it's just wrong. Resentment against someone whom has no control that they have this disease is very sad and a bit self centered (IMHO).
I guess the question I would ask your DM is, Would your dad, her husband have asked to have this wretched disease just to make her suffer?
Ok, lets be realistic. This journey is no fun, and as I have said, it certainly isn't the fault of person afflicted with it. (I understand you get this) And though I really have no specific answer for you as how to get it across to your mother my thought is that she needs to get educated on this disease. Has your Mother spoken to a medical professional about how she feels? She needs to get her hands on everything she can read about it. Educate herself on how to get past those feelings and either make the journey with her husband or find someone whom can care for him, Frankly she may not be able to handle the day to day care of your DD, which is fine! Nothing wrong with admitting that. But at the very least she could be an advocate for your DD's care.
Others will come by and post books that should be helpful but the million dollar question is as you said, if she feels compelled to try? It should help her to get past the feelings she is having.
Have you had a heart to heart with her? Have you just been truthful to her? That being resentful is only spinning her wheels? And most likely causing some of the behavior issues? Certainly not all, but as you know from experience if you approach a screaming child the proper way, you can defuse some of the behavior. Of course it takes practice and sometimes nothing works. But I promise if you approach this journey with Love and understanding, compassion and patients it will make the journey smoother. Her resentment towards your DD will only make this journey harder. Which in turn makes her caregiving journey hard as hell. If she wants to make it easier on herself, then she should just go with the flow. I understand that the stubbornness and other behaviors are hard to deal with. Some meds will help to control that. But standing toe to toe with someone with dementia just to make a point makes no sense. Your DD's reasoning button is broken, but your DM's should be working fine. 
Again, it's wonderful that you are advocating for your DD and hoping inturn to make the best of this journey for your DM. It's doesn't all have to be bad, frankly looking for the good makes everyday a better/good day. Best of luck to you.
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Originally posted by: Marp
I've given my mom a book & sent her links to some good reading on the Internet. Unfortunately, my dad is demanding a lot of attention and I don't think she has much opportunity to read them. Finding time to pay the bills can be a challenge I think.
She is losing the opportunity to do a lot of what she used to do and it upsets her. She used to do a lot of sewing and sometimes she needs to go check out various craft stores to find something she wants for a project. My dad always wants to go with her. Then he complains she took too long. If she then doesn't buy anything after all that shopping he complains some more. About the only shopping places she can go without upsetting him are Walmart (he loves Walmart) and a local craft store. She can't even buy underwear for herself without him looking over her shoulder.
I told her we need to find some ways to get her out of the house without him so she can do a little bit of what she likes to do. Last weekend, I brought him to my house for 2 days, which she said helped. We were expecting a winter storm so she didn't go out too much, mostly stayed home this time. But, maybe next time, she can go out and buy some underwear without him worrying about what she's buying.
And, of course, he always has to be right & if something goes wrong, it's always her fault. He makes that very clear! She is getting tired of that.
She's just overwhelmed & somewhat resentful because she's losing so much of her life to this disease too. I'm trying to get her to try some things to make life easier for her because he's not going to get better and she can't continue the way she is...
quote: Originally posted by lurk:
I guess I'll be the first to give you (and your Mom) reading suggestions. We have been on the journey for a year after diagnosis and about four or five years before. The books that helped me the most were Creating Moments of Joy by Jolene Brackey, The Validation Breakthrough by Naomi Feil and The Dementia Experience by (I don't know who at the moment.) When JAB gets online she can give you a cut and paste for this last one. It was SOOO helpful to me. I saved it, but I don't know how to cut and paste.
MARP, let your Mom grieve also. This is so hard for her, and if your father is difficult, and especially if he was difficult before, I can totally understand her feelings. RKG is right that she must get educated, but she'll have to have time to figure everything out. There is so much information, so many emotions, so much baggage.
And then there is your father. He probably needs meds to mellow his own attitude. It helped my dear husband so much. He became a much nicer guy after he was diagnosed and on meds.
Okay, this is enough to absorb for now. I promise you will get good help. Educate yourself first and give your Mom a Christmas gift of a couple of good books. We're here to help.
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Originally posted by: lurk
I guess I'll be the first to give you (and your Mom) reading suggestions. We have been on the journey for a year after diagnosis and about four or five years before. The books that helped me the most were Creating Moments of Joy by Jolene Brackey, The Validation Breakthrough by Naomi Feil and The Dementia Experience by (I don't know who at the moment.) When JAB gets online she can give you a cut and paste for this last one. It was SOOO helpful to me. I saved it, but I don't know how to cut and paste.
MARP, let your Mom grieve also. This is so hard for her, and if your father is difficult, and especially if he was difficult before, I can totally understand her feelings. RKG is right that she must get educated, but she'll have to have time to figure everything out. There is so much information, so many emotions, so much baggage.
And then there is your father. He probably needs meds to mellow his own attitude. It helped my dear husband so much. He became a much nicer guy after he was diagnosed and on meds.
Okay, this is enough to absorb for now. I promise you will get good help. Educate yourself first and give your Mom a Christmas gift of a couple of good books. We're here to help.
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Originally posted by: SnowyLynne
Mom will be lost too if she doesn't get help......
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Originally posted by: Rkg
Marp, unfortunately we all lose so much because of this disease. Your DM needs to make decisions, does she want to be a caregiver? If so, arming herself with loads of information will go a long way to a smoother journey. Honestly, shopping does go by the way side. Take it from the shopping queen. It is hard to lose ourself's, but that is an unfortunate fact of the caregiving journey. Are there ways to minimize the impact of caregiving? Of course, respite! And believe me, your Dm probably needed that time at home by herself. Just to do nothing! We all need that some times. But of course time out away from this damn disease just to be normal for 3 or 4 hours is a god send. Hopefully you and your siblings will be able to offer that to your Mother.
Hopefully getting some respite will help your Mom to lose the resentfulness and calm both her and your DD.
But I really recommend her taking the time to educate herself, by reading, joining the forums, support groups and anything else that allows her to understand that your DD is changing not because he wants to, but because this disease is taking him somewhere none of us are ready for.
So she has to learn to be flexible and go with the flow of the journey. Yes it's a sacrifice, that only she can choose to make. But let me tell you from experience (one, as a sideliner watching my FIL go thru this journey and now as a caregiver, caring for my DH along this journey. Actually my Dh had AD the same time as his Dad, he just hadn't been diagnosed. And I can tell you who's journey has been smoother! My Dh's, because I refuse to approach it like my MIL did, with anger, hatefulness, resentment etc) There are many ways to do this journey, but when you let go of the anger and sadness, hatefulness, resentfulness, etc this journey will go much smoother than banging your head against a wall because life threw you a curve ball. Believe me when I say, I never expected my 40's and 50's being spent on this journey, but it is. I choose to make it as easy on my DH as possible. Best wishes!
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Originally posted by: Almost Family
Hey there, Marp.
My MIL is also a reluctant caregiver and my FIL's AD has certainly been a burden to her. She recently quit working and has been noticeably depressed. MIL, bless her heart, hasn't been quick to accept the diagnosis and I don't think she has been interested in learning about what to do day to day. The result is she is also frustrated.
While I've been angry with her at times, I am trying to realize that not everyone is a natural caregiver. So I'm trying to cut her some slack and try to "show not tell" when possible. Last time they visited I sat a tray of peanuts in front of FIL for him to shell for the birds and he had a great time (instead of just sitting like a lump with nothing to do until he fell asleep in the chair, which is what I think he mainly does at home with her - because she doesn't know what he could do, not because she doesn't care...). Anyway, I sent them home with 10 lbs of peanuts, telling MIL that these were my gift to her - that he could be busy and she could do other things without him pacing around. Well, apparently this has been a big hit and MIL is thrilled that FIL can give me a gift for Christmas (the shelled peanuts for my bird feeders - he hates the squirrels so can't have feeders any more) and she seems to have found something he can do.
So, what I have learned from this experience is that when I go visit them this weekend my goal is to try to gently show MIL some more things FIL can do to stay out of her hair! I'll try to make a big, positive deal out of it.
Oh, and I'm promising myself that I'll complement MIL at least 1x each day on how patient she is with FIL (because my gosh she must be, even if I don't see it!)and what a great job she is doing (because, face it, they are both alive and eating and no one has burned down the house!!!!) I think that will soften her up enough to read some of the pamphlets that I will leave around "by accident".
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Originally posted by: JAB
Hi, Marp.
Lurk is talking about Jennifer Ghent-Fuller's article, "Understanding the Dementia Experience":
http://alzheimers.boomja.com/A...xperience-59731.html
It might also help a little bit if your mother reads this article on "anosognosia", a symptom many ADLOs develop, which makes them unaware that they have problems:
http://alzheimers.boomja.com/A...osognosia-32271.html
I have trouble getting my head around how you could truly not know you have problems ... but the first part of this essay helped me get a bit of a grasp on the concept:
http://opinionator.blogs.nytim...sognosics-dilemma-1/
OK, it's one thing to tell someone they "need respite" and another thing entirely to figure out how to get it on a regular basis. (Bless you for helping your mom out!)
Talk with your local chapter of the Alz Assoc:
http://www.alz.org/apps/findus.asp
and your Area Agency on Aging:
http://www.n4a.org/about-n4a/?fa=aaa-title-VI
to find out what programs and services are available where you live. Some may be programs for your father, such as Adult Day Care (although for heaven's sake, call it something else! Senior Center, Activity Center, etc.) Adult Day Cares often even provide transportation to and fro ... a great way for you mother to regularly get time for herself, while knowing that your father is safe and probably having a good time. Others may be programs that just make life easier for your mother, maybe something like Meals On Wheels so she doesn't have to cook as often.
There may be a number of financial assistance programs they could tap into, to help pay for your father's care. There are some tools and helpful articles on how to find the programs for which they are eligible at:
http://alzheimers.boomja.com/F...ssistance-27304.html
If your father was ever in the Armed Forces, even if he never saw action, be sure to check into the VA's Aid & Attendance benefit:
http://alzheimers.boomja.com/V...-Programs-49965.html
Another thing I'm wondering about ... maybe your mother is afraid of what all the medical expenses are going to do to her financial future, and resents the idea she may be left destitute. There are ways for her to protect her share of their assets while still accessing financial support programs such as Medicaid, but the laws are complicated. If she hasn't already done so, she really needs to talk with an elder law attorney with a lot of expertise in Medicaid regulations, asap. You can find an elder law specialist here:
http://www.elderlawanswers.com
http://www.naela.org/MemberDirectory/
http://www.nelf.org/
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Originally posted by: Marp
Thanks Almost Family.
What you're doing with your MIL is very similar to what I'm trying with my mom. Unfortunately, my mom has tried to act upon some of my suggestions and the results haven't been as successful as yours was with the peanuts.
For example, my dad likes to vacuum. Why, I don't know; he just does. So, one day when my mom wanted to do a little sewing she asked him to vacuum. He was more than happy to do so, however, he insisted he needed to move the furniture so he could vacuum under. He has a bad back and, per doctor's orders, should NOT be moving furniture. He insisted, however, that he had to move the furniture. This mean that my mother had to stop her sewing to help him move furniture. Giving him something to do ended up being more work for her.
He's also not very nice to her. If something breaks or gets lost it's HER fault, not his, even if whatever is missing or broken is something she never uses. She is the one who moved it and didn't tell him or she is the one who can't read instructions and broke it. As we know, this is typical Alzheimer's behavior, but my mom is having a real hard time dealing with it, especially when he starts yelling and threatening her (she grew up in a home where her step father regularly abused her mother so that type of behavior is very frightening to her).
I'm trying to help, but I don't know how much longer my mom can be a caregiver. I don't know how much longer I can stand to watch her hurt so much (she cries). They are coming to my place for Christmas this weekend & I'm already stressed out. Visits with them are no fun anymore.
quote: Originally posted by Almost Family:
Hey there, Marp.
My MIL is also a reluctant caregiver and my FIL's AD has certainly been a burden to her. She recently quit working and has been noticeably depressed. MIL, bless her heart, hasn't been quick to accept the diagnosis and I don't think she has been interested in learning about what to do day to day. The result is she is also frustrated.
While I've been angry with her at times, I am trying to realize that not everyone is a natural caregiver. So I'm trying to cut her some slack and try to "show not tell" when possible. Last time they visited I sat a tray of peanuts in front of FIL for him to shell for the birds and he had a great time (instead of just sitting like a lump with nothing to do until he fell asleep in the chair, which is what I think he mainly does at home with her - because she doesn't know what he could do, not because she doesn't care...). Anyway, I sent them home with 10 lbs of peanuts, telling MIL that these were my gift to her - that he could be busy and she could do other things without him pacing around. Well, apparently this has been a big hit and MIL is thrilled that FIL can give me a gift for Christmas (the shelled peanuts for my bird feeders - he hates the squirrels so can't have feeders any more) and she seems to have found something he can do.
So, what I have learned from this experience is that when I go visit them this weekend my goal is to try to gently show MIL some more things FIL can do to stay out of her hair! I'll try to make a big, positive deal out of it.
Oh, and I'm promising myself that I'll complement MIL at least 1x each day on how patient she is with FIL (because my gosh she must be, even if I don't see it!)and what a great job she is doing (because, face it, they are both alive and eating and no one has burned down the house!!!!) I think that will soften her up enough to read some of the pamphlets that I will leave around "by accident".
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Originally posted by: just exhibit love
Hi Marp
yes my friend you and I can only imagine what it may be like to see the most important person in your mother's Life..Losing his precious memories of their Life together...
she is doing her best..at this moment in time..
and each day your mother must adjust to help your father's sense of well being..and this takes a lot of time and energy.
I feel you need to have faith..that your mother will find the strength she needs at this time..
stress is not always easy to control..
my personal experience is all I can share with you..
I had to Learn to Listen more than talk.. as my husband's mother was so frustrated at times..not at me..but with Life..and I had to Listen carefully to what she was not saying..and find ways to help her..help herself..
our Loved one's are dancing as fast as they can..and are scared..and know down deep they cannot remember..
and our Loved one..sometimes felt very uneasy in her surroundings..and emotionally on some Level our Loved one..knew if someone was upset..Margie always needed me close..for her sense of well being..I called her my Little shadow..
your mother knows the man she married.. best..
Patience is the answer..with your parents..
may you find ways to help them both.. may you consider asking your mother what you can do..and together work out a plan..for the good of all.
may you...be a good Listener when your mother shares her feelings with you.. from her heart to yours..and encourage her to ask for help.. when she needs it..Let her decide what is best.
Experience..is the best teacher.. by trial and error..find what works..and avoid what does not work...we Live we Learn.
this I know for sure..we each can make a difference..in the Life of another human being with alzheimers..if we keep peace in our Life..and Love in our hearts.
Namaste
Love Rosie
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Originally posted by: Almost Family
Oh yes, Christmas (and other holidays when we get together with MIL and FIL) are certainly becoming special trials these last few years. We are going to see them Friday and stay through Sunday and I am dreading it. I feel terrible about this, but I am really really really hoping the snow hits early so we can't get out of town. That's hateful of me, but ... may as well admit it! However, as my partner reminded me, if we don't go this weekend we will have to go another weekend so we may as well "rip the bandaid off"!
Ok, so the vacuuming thing - one chore we have this weekend is to replace the outdoor rug runner on the ramp at the back doors. Why? Well it seems there was a very enthusiastic vacuuming session and after FIL cleaned the inside of the house floors he moved on to the next rug he saw - but it was outside! The runner apparently got all torn up and so now we have to replace it.
Good luck with your weekend. Maybe you can treat yourself after they leave?
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Originally posted by: Marp
Thank you Astro.
I'm just really scared she won't pull through. She is so bitter towards him right now because of the hurtful things he did/said before he was sick and by the aggressive and inconsiderate behavior he exhibits now.
I cry because I don't feel like I'm making much headway making things easier for her. I try but I just don't seem to make much progress.
I also sometimes get fed up with my dad - he is so self-centered, and he gets angry when he doesn't get his own way. I want to scream at him and tell him to stop acting like a child. Sometimes I can't believe he can be so inconsiderate when she's on the verge of tears; can't he put aside his wants for a minute and think about someone else?
I've read that Alzheimer's patients can't help they way they behave, but sometimes he turns it on and off like a light. It's hard to believe he isn't capable of being manipulative when he can be nasty and rude to her one minute then nice as pie the next because I walked through the door.
quote: Originally posted by Astro:
Marp,
I was in the exact same position you are in. It was heartbreaking to me because not only was I losing my dad but I was losing my mom as well.
She was like yours...very reluctant to take help though would definitely need it. She followed my dad around trying to correct him and make sure he didn't do anything he wasn't supposed to. (This was before she read a few books...she was doing what her instincts told her to do and it wasn't helping much at the time..)
Mom was confused, angry, stressed...her blood pressure went up because she wasn't sleeping because my dad would wander most of the night. When I saw how high her blood pressure was, I stepped in to try to take over because I knew I had to do it. (even though I lived 3 hours away).
The first thing was to get dad's medication adjusted. I knew that until he was managed the best as possible, it would continue to be hard on mom. She read books...I sent her links. I told her that we cannot change so many things that we have to accept them and accept that's how they are. I put her in touch with the ALZ association for the state they are in and they sent her a lot of good information and reading.
Basically, I just wanted her to understand that much was out of her ability to control or change and slowly she did accept that.
To have my dad's meds adjusted, he was admitted to a geri-psych ward after getting out of the house one night (he never slept through the night).
More than anything, I let my mom know that she could call me any hour, day or night if she needed to vent or needed help. Eventually I had to go there and stay for a long period but I know that my mom couldn't deal with much more of what she was trying to manage on her own.
Trust me: There were literally MONTHS where I would suggest things for my mom and she wouldn't take those suggestions. It was trying for me because I wanted to help but she wasn't following my advice and here's what I came to accept:
They have been married for 50 years and in that time, my mom had her own ways of providing for my dad and doing things for him. She was proud of that...it was her job and she did it well. When his disease kicked in, all of that went out the door. She had to second guess all of her instincts and reconsider the ways she had always done things for him. And that took time and it took some accepting to see it that way.
She learned that instead of correcting him, to encourage him so long as what he was doing wasn't harmful. She learned to give him space as long as he didn't leave the house. She learned to let him dig through things when he was 'looking for something' instead of spending a lot of time trying to figure out what he was looking for.
In short, she had to relearn how to deal with a man that she knows as well as she knows herself. And over that 50 year period.
So it will be rough on your mom. As children, we just have to make sure that both of our parents are protected and healthy. I made sure my mom was going to HER doctor's appointments and not just taking dad to his. It was very difficult for a while but it has gotten much better. She's more confident about dealing with him and she's read so much and learned so much that she has a better idea of how to handle issues that arise (as they always do).
Be there for your mom even when it is hard and even when it is painful. Make sure she knows you are there for her and will do anything to help. I think that alone will make her feel some comfort.
My dad also showed signs of aggression toward her (never had in those 50 years) and that did scare her and shake her up horribly. I think she felt like a stranger had taken over and in a way, that's what happened.
Medication was the key to my dad's agitation and confusion. When my dad was better managed, life became easier for my mom to do her share of being an advocate and caregiver for him.
I honestly didn't know if she was going to make it through this with how it was affecting her and I refused to lose both of my parents to this disease so I put everything I could into taking weight and responsibility off of her shoulders and taking it onto mine. For a while, at least. It gave her the time and respite to learn and study to understand AD and it allowed time for my dad to have his medication adjusted to where his behavior was less threatening and he was less agitated.
I know this will be a very long, winding road. There will be more downs and hopefully a few more ups but overall, I think day by day we can take it and that my mom is better equipped to deal with an manage things now that she has help, respite and support. She wanted so much to do this all on her own at the expense of her own health and it simply wasn't possible.
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Originally posted by: Dorinne
Astro,
That is a wonderful post.
I wish you were my Daughter, my Daughter ignores the whole illness, even when I tried to tell her what was happening.
I was ready to crack, I got sick. I finally learned (from this Alz forum) how to handle most things my Hubby is going through.
Great post.
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Originally posted by: Starling
Honest he can NOT help how he is acting. That is what dementia is. It is not just a memory disease.
In the early stages they tend to look so normal, and act normal so much of the time, that when a symptom does show up, especially if it is intermittent, it is hard to accept that it is the disease that is causing the symptom.
But look at it this way. There are diseases that cause people to physically stumble. They don't do that stumbling consistently in the early stages of their disease, but they have no control over when the stumbling happens.
The same thing happens with dementia. A person who used to be charming and bright will begin to have some occasional nasty phases. And then some of them are nasty all the time. They can't help it, but medication can help control the symptom.
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Originally posted by: Marp
Thanks, everyone for your suggestions and kind words.
It is very difficult.
My mother grew up in a home where her stepfather abused her mother for many years so my dad's nasty behavior has a couple of effects on her:
1) it scares her silly sometimes;
2) it angers her - she doesn't want to be a victim like her mother was so she gets angry.
Also, my dad did some rather nasty things before we knew he was sick. I didn't know about them until just recently. Looking back, I suspect those things he did back then were early symptoms of the disease, but we didn't know that - we didn't know he was sick, &, even if we had, we wouldn't have known those behaviors were symptoms.
Thus, my mom is very hurt and angry for a lot of reasons & I just can't get through to her consistently. Some days she seems to be trying & either listening to me or following my example. Other days, the barriers go up & I can't have a rational conversation with her.
I just don't know what to do & I'm scared.
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Originally posted by: Marp
quote: Originally posted by jfkoc:
I question not saying or doing anything. So what is going to happen if you tell your Dad "i do not like it when-------." He'sgoing to get angry?
Actually, yes, and, the resulting tantrums are worse than before the disease. It's really scary. My mother has taken to putting her cell phone in her pocket and going into another room when he gets too angry. By the time she comes out, he's usually forgotten the situation (one of the few benefits of the disease) and is no longer angry, although not always. She, unfortunately, ALWAYS remembers and harbors a lot of hurt and bitterness that does affect her future interactions with him.
quote: Be certain they both know you love them. Try to stay positive and be a happy moment when they are with you.
Oh I try, but, as you know, that can be very difficult. It hurt so much to see my mother upset, and the anger she radiates creates a tension in the room that is almost unbearable. The last time I was over there, I found an excuse to take my dad out for awhile so I could get away; I couldn't stand to be in the house it was so tense.
quote: Good Job...good daughter.
Thank you.
It's nice to find someone who understands. So much of our LOs behaviors ARE a result of their disease, but, with some LOs, there is the possibility that not all of the behaviors are directly related to the disease. It's so difficult to know the difference (I wish my mom could talk to you - she'd LOVE to have a kindred spirit).
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Originally posted by: jfkoc
Maybe she needs to put her big girl panties on and deal with it. It is really hard to stop a behavior even when you know it is hurting you.
Anger can go way back...I know.
My e-mail is jfkoc@aol.com .....maybe she would like to know she is not alone.
Keep on!!!!
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Originally posted by: Marp
quote: Originally posted by jfkoc:
Be certain they both know you love them. Try to stay positive and be a happy moment when they are with you.
I have a question on this one - works real well w/my dad because he's easily distracted and forgets what he did earlier, thus some smiles and laughs change his mood quickly. My mom, though, remembers the hurt and will sit in a chair & fume, putting a damper on everything. She shoots daggers at my dad with her eyes & mutters under her breath about him. I'm there trying to help and she ends up upsetting me before she's done.
I try to talk to her, but, if she's angry enough with my dad, I can't get through to her. So we have my dad in la la land thinking everything is fine because I made him laugh while my mom is livid.
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Originally posted by: jfkoc
Welcome to our merry band. Things are likely to get less overwhelming as you share and learn with us.
I think you are most perceptive and I think I must be married to your father's clone. I have stuck my neck out more than once by saying that I think a lot of situations are vivadly colored by personality and baggage. I do not, at this time, believe that everything "is the disease."
I question not saying or doing anything. So what is going to happen if you tell your Dad "i do not like it when-------." He'sgoing to get angry?
I think what you can do for your mather is just let her know you love her and are there for her. Give her all the attention you can. There is much she is going to have to work on/through herself.
Be certain they both know you love them. Try to stay positive and be a happy moment when they are with you.
Any specific situations you can bring to the group and we will all chew them over.
Good Job...good daughter.
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Originally posted by: Marp
His "occasional" nasty phases only occur when he is alone with my mother. It NEVER happens when anyone else is around. He can be yelling at her one minute, then I walk in the house, and he's all smiles. If that's not manipulative, I don't know what is.
Also, he went through a period where he was physically violent - threw things. Everytime he threw something or threatened to throw something, the object was something that belonged specifically to my mother -- something she had made or something that someone had given specifically to HER. Never once did he threaten to throw anything of his or anything neutral (like a pot); it was always something that belonged to HER. Thus, he was making choices in regard to what he was going to do; it wasn't some random thing he did, otherwise the object of the day would have been the one he could reach first.
Furthermore, one of the facilitators of the support group I attend said that Alzheimer's patients can be "crafty." That's why it's often difficult for doctors to spot Alzheimer's - the Alzheimer's person fools the doctor. Crafty and manipulative are different flavors of the same meaning. And the woman who facilitates this group owns a home care agency that specializes in caring for Alzheimer's and dementia patients; thus, she would be very knowledgeable on their behaviors.
Lastly, books I've read on Alzheimer's say Alzheimer's patients often engage in behaviors because they can't control their lives so they do some things in order to gain control. They fixate on a routine; they rage about some little thing, etc, all in an attempt to control their situation. In other words, they manipulate their situation so they can handle it.
In the later stages, Alzheimer's patients may not have the ability to manipulate, but, earlier in the disease, it appears they do. My father is focusing anger on my mother specifically for some reason; I cannot believe otherwise, based on my observations and on information I've gleaned from other, more expert, sources.
quote: Originally posted by Starling:
Honest he can NOT help how he is acting. That is what dementia is. It is not just a memory disease.
In the early stages they tend to look so normal, and act normal so much of the time, that when a symptom does show up, especially if it is intermittent, it is hard to accept that it is the disease that is causing the symptom.
But look at it this way. There are diseases that cause people to physically stumble. They don't do that stumbling consistently in the early stages of their disease, but they have no control over when the stumbling happens.
The same thing happens with dementia. A person who used to be charming and bright will begin to have some occasional nasty phases. And then some of them are nasty all the time. They can't help it, but medication can help control the symptom.
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Originally posted by: Marp
I really wish she could do this, but I don't know if she can. She cries too and I can't stand it; it hurts so much to see her so unhappy.
I just don't know what to do.
quote: Originally posted by jfkoc:
Maybe she needs to put her big girl panties on and deal with it. It is really hard to stop a behavior even when you know it is hurting you.
Anger can go way back...I know.
My e-mail is jfkoc@aol.com .....maybe she would like to know she is not alone.
Keep on!!!!
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Originally posted by: Marp
I've thought about suggesting this, but she is really anti-medication. She takes blood pressure medication and that's about it. I think she would be resistant to anything that would be a mood changer.
My dad is on quite a few meds and she questions if all of them are necessary. She makes sure he takes them because the doctors says to take them, but she wonders if the doctors have prescribed too many things.
The last time he went to the doctor for his 3 month follow up (his doctor has been having him come in for a follow up every 3 months), he made some changes. Maybe, eventually, he won't take so many.
quote: Originally posted by jfkoc:
Added thought...maybe she would benefit from some medication for a while.
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Originally posted by: jfkoc
Added thought...maybe she would benefit from some medication for a while.
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Originally posted by: lurk
And when is the last time she went to her doctor? Maybe you could contact her doctor about her and get her in for a checkup.
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Originally posted by: jfkoc
How about sitting down and having a good cry with her and maybe throwing some pillows around.
Keep on...some things are going to fall into place!!! You are doing a great job of caring.
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Originally posted by: Marp
She just went about 3 months ago for a blood pressure check. She has another one scheduled for February 9. I've debated on whether or not to call her doctor to discuss her emotional state. She is still completely competent and able to handle her own affairs so I don't know if he'll talk to me. Even if he did, I might be stepping on my mom's toes by handling her doctor's issue when she is still able to speak for herself.
quote: Originally posted by lurk:
And when is the last time she went to her doctor? Maybe you could contact her doctor about her and get her in for a checkup.
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Originally posted by: lurk
I've reread the posts, and you've received much advice. I believe that number one, your Mom needs to believe that you really, truly understand.
You've admitted that you've lost it with your Dad in the little time (by comparison) that you spend with him. She deals with this all the time and, very importantly, carries the baggage that someone mentioned. After all this time, she's been dealing with it for too long to be more interested in his well being than her own, especially when the abuse continues.
I only say this because I too had a husband who was difficult to live with before the disease. We know that they drift in and out, and I believe by what you say that sometimes your DD is being mean-spirited when it isn't the disease!!!
Others may disagree, but I think you should call him on it, despite the consequences. You and your mother are being held hostage--this is an abusive situation. If he doesn't back down, then you need help for him in terms of meds or outside intervention.
For now, your Mom needs your support. You can't possibly understand everything she has been going through. I say this from experience. Because you are trying to be "the person in the middle" she may not realize that you totally have her back. Sorry, this is too long, but, oh, I would have so much more to say. I admire your efforts, but everyone is going to burn out if you don't nip this in the bud. Good luck.
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Originally posted by: Marp
My father was just diagnosed in April 2010, but we have probably been dealing with the disease for 8-10 years. We just didn't know it.
During those 8-10 years, my mother has gotten a bit impatient with my dad when he would do things like repeat the same story or question over and over, lose things, or do some task in an odd/awkward way. He didn't like that she was doing that, probably because he didn't know what he'd done. Likewise, she didn't know something was wrong; she just thought he was being irritating (so did I). Perhaps some of the resentment he harbors & some of the ugly things he's said/done are his way of defending himself against what he thinks were unfair accusations, etc.
And, of course, my mom has the emotional baggage from her abusive step father and the years of dealing with my dad's odd behaviors without knowing that those behaviors resulted from his sickness.
It's so complicated. I'm hoping that, once my mom meets with the lady from the County Mental Health Department, we'll be able to get something set up so he's out of her way several times a week. Then we may be able to get her into some type of counseling to work through her issues so we can better determine what is disease related and what isn't.
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Originally posted by: Marp
jfkoc - I've given my mom your e-mail address. I don't know if she'll use it, but I gave it to her as an option.
Can you tell me a bit more about how your husband behaved and how you dealt with it? How did you distinguish between behavior that was probably disease related and that which was probably just a normal part of his personality?
When you confronted the behavior that didn't appear to be disease related, did you think the dementia changed the way he responded or affected how you needed to handle the situation?
quote: Originally posted by jfkoc:
Maybe she needs to put her big girl panties on and deal with it. It is really hard to stop a behavior even when you know it is hurting you.
Anger can go way back...I know.
My e-mail is jfkoc@aol.com .....maybe she would like to know she is not alone.
Keep on!!!!
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Originally posted by: Marp
Thanks, Lurk.
We had another incident yesterday where I had to leave work to go over to their place. Long story, but dad got combative with mom (not the first time). I just happened to call from work to check on them when it was going on and she started screaming into the phone telling me she can't take it anymore.
I told her I was going to call 911, but she said, no - dad had an eye doctor appt at 4:15. Not sure why that would matter, but she was pretty upset.
Dad wanted to talk to me so she handed me the phone. Dad asked if I had accidentally taken his car keys when I left last night. I hadn't so I told him I didn't think so.
Long story, but my mom had taken his keys and hidden them so he wouldn't drive. He was having vision problems and she didn't think he should drive until he had that checked out. He, of course, is insistent upon driving so she hid the keys. When he got angry she told them maybe I had accidentally taken them home (I have done that before).
So I called the ALZ association to see if 911 would be the best option at this point - my mom was talking of going somewhere & my dad was as well. If I called 911, they might arrive to an empty house.
After talking with Alz, I didn't call 911, but left work & went to their house. They were both there & both pretty angry. I ended up going to the doctor's appointment with them and talking with the doctor and I stayed at their house until 10:30. I will be going back over today.
In the meantime, my mom & I talked with the ALZ association 24/7 number while my dad was occupied doing something else. My mom didn't want to, but I got her to do it. They reiterated the calling 911 when dad becomes combative. They also convinced her to let them send a social worker out to the house.
We'll see where all that goes. My mom is worried that the social worker will set my dad off again because they're nosing around. I told her that I would think the ALZ Assoc social workers were very well versed in Alzheimer's/dementia and would handle the situation carefully. This would be a different scenario than if we called Adult Protective Services where the social worker may not be well versed in Alzheimer's/dementia issues.
Mom is still not so sure, but she's grudgingly going along for now. I think she's also going to try to grudgingly mask some of the anger she feels toward my dad to protect herself. I told her she doesn't have to change her feelings, just some of he actions and only for a little while until we can get some things straightened out.
I even proposed we tell dad the doctor thought going to ALF for a month or so might be a good idea. He could stay there for a month and my mom and I could have some uninterrupted time to really talk and figure out what's best.
quote: Originally posted by lurk:
Good job, Marp!
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Originally posted by: lurk
Good job, Marp!
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