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    Angela Lunde

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  • Alzheimer's blog

  • Nov. 15, 2011

    Denial challenges families in Alzheimer's caregiving

    By Angela Lunde

53 comments posted

Alzheimer's Caregiving

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A couple months back I read a comment from one of you that stuck with me.  It was from a woman (I'll call her Norma) whose mother has mild Alzheimer's. Here's some of what she said:

"My brother insists that we not fix our mother's meals and we let her do it (she is struggling) ... he says she only has very mild short term memory loss (and therefore believes she will figure it out) ... I feel my family is in denial about mom's condition & looking for yet another reason to stay uninvolved."

The theme of family members in denial comes up frequently on this blog. In previous posts, I've addressed why denial is so common, the role it serves and the detrimental consequences of getting stuck in denial. Yet, putting the notion of denial aside for a moment, most of us caring for someone in the early stages of a dementia go through this sort of dance where we waver between promoting independence and offering help.

We see things changing and notice the person losing the ability to do what they once could. Often we're reluctant to step in and take over as it may feel like we're giving up on the person or crushing their dignity. Yet, it can be heart wrenching to watch them struggle. We want desperately for things to stay static and for the person (and us) to maintain independence.

And it gets even more blurred, this dance of knowing when to push independence and when to step in and help (or take over) because it's not always simply a problem of memory or forgetfulness. Sometimes it's a decline in processing.

For example, it might seem logical that Norma's brother think that his mom should be able to remember how to fix her own meals. After all, she's been doing it for 50 years. And longer term memories that have been over learned are generally better preserved.

Here's the deal though — most persons diagnosed with Alzheimer's lose some ability early on to sequence or plan out an activity, to organize, initiate and monitor actions. This is called executive functioning.

Think about the steps involved in fixing a meal: deciding what to make, identifying ingredients, putting the items or recipe together in a particular order, concentrating and often multitasking. Preparing a meal or following a recipe that includes several steps is difficult and sometimes unachievable even in early dementia due to changes in the brain that are responsible for processing.

I think we'd all agree that people with Alzheimer's aren't choosing to give up skills of daily living such as fixing meals, managing finances, or driving. They wouldn't choose to forgo their independence, and they aren't lazy or unmotivated. The truth is, people with Alzheimer's can't "just try harder" and it's not realistic to expect them to do all they used to do.

I realize though that some family members will still not get it.  Quite possibly they're in denial. From time to time, we're all in denial about various aspects of our life. It's how we cope — denial masks emotions of grief, loss, fear and uncertainty. I ask you to do your best to be kind, gentle, and calm in approaching a family member in denial. Anger will only cause them to dig their heels in deeper. And when we resist, blame, or reject, we stay trapped in our own anger.

I don't mean that you can't actively work to make things better with family members — I simply suggest that you make peace with the way things (and others) are today. Choosing to operate from a place of acceptance is a form of self-care.

"If he could, he would."
- a wife and caregiver

53 comments posted

blog index

  • November 8, 2012 1:42 a.m.

    As an RN that works in a closed Alzheimer's unit in a long term care facility you would think it would be easy for me to deal with my mother's descent into dementia and oblivion. I may be able to work with patients in my facility all day long and have wonderful results, but I walk into my mom's apartment and she is convinced I lie to her, lie about her, misquote her, misquote her doctors to her, etc... I can't do it. I have siblings that are in denial and want me to handle everything because I am a nurse and I know about these things. I get enough abuse verbal or otherwise from the occasional cognitively impaired patient at work I don't need it constantly from my mom. I have a life and three kids and a challenging job and a woman who hates me for telling her she isn't able to do or remember things anymore.

    - Michele

  • October 21, 2012 6:09 p.m.

    Venting: I have one brother, mom is 76 & dad is 84. Five years ago I noticed the unusual behaviors in mom, plus she had "lost" the sense of smell about 10 years earlier. I took mom to doctors because no one else would believe me. It was a battle each time to convince her to go. My dad & brother did not support me. Mom eventually became convinced that I was trying to make her & others think she was crazy. She refused medical appts. I wrote her siblings & told them she had been diagnosed with mild Alzheimers & they should all spend time with her (they live in different states). I received horrible accusations of being a disrespectful daughter & telling people embarrassing things. Mom told everyone that I was on a mission to label her "crazy". Now, she's had a stroke & she thinks she can manage. She's much worse. She's gotten locked of the house in the cold, she's wandered off into the street, she tries to pack her bags & leave in the middle of the night. And lots of dangerous home behavior. I tell Dad he needs help. He tells me he can do it himself and thinks the neighbors can help if they need it. I am so angry & devastated that I can't seem to get through to them to PREVENT what will happen & that I have no family support. Now, my two daughters are understanding, but their hands are tied too. I feel guilty for being filled with resentment & anger. Dad can afford a simple alarm system to make sure she st

    - Sandra

  • September 4, 2012 10:44 a.m.

    Hello, My mother is the primary caregiver for our father who has progressed into the mid to late stages of Alzheimers. All of our family knows how extremely difficult, tiring and stressful it is for her her to do so. My parents have full coverage healthcare thru Genworth (in and out of the home) which my Mother refuses to utilize. My parents live quite a distance from us however, we help and relieve her as often as twice a month or more. My father is in daycare for three days a week, finally. However, my sisters and I have noticed a dramatic change in my mother. She is extremely angry and tense. She will not discuss any of her feelings with us and has shut my sisters and I out of her life and my father's. We know she is in pain and denial. We want to provide support but cannot if she will not allow us. Any suggestions? We are very worried about her mental state and how it affects not only hers, our father's care and quality of life. HELP!

    - Karyl

  • July 24, 2012 7:56 p.m.

    I brought my sister to live with me 18mos ago and rec'd the expected diagnosis. She is 67, I am 62, I have a sister 68 and a brother 57. Now that my sister is at moderate stage and I announced that I can no longer do this and need to put her in a facility I am getting so much intervention from my sister and brother. I am heart broken. I have never had a day off from this. When they have visited (out of state)they think it is vacation and really don't spend the time talking to her. Anyway, my point is I am shocked that they have not helped me at all and even more shocked that the time will come when it will be too late to cry with her and love her. I believe this has ruined my relationship with them forever. I feel invisible except for when they ask ridiculous questions. And they show no kindness or patience it just really amazes me. thanks this helped

    - Jill

  • February 2, 2012 9:36 a.m.

    My grandma is an amazing person, she is so smart and she used to be so independent, for the longest time shes been the only person that has taken care of me and my sister, she did admirable things. At 65 when me and my sis were 15 she was diagnosed we did an experimental treatment in san diego which didnt work, now we are doing a temporary fix really in Israel but we need her as long as we can keep her at least knowing who we are. Now i feel very lonley without her and as she was my hole support system, i find myself panicking all the time about what am I going to do how will I live without having her by my side on my wedding, kids etc im only 20 !! I left uni to be able to take her to israel for treatment and now im having trouble finding my way back to studying im not even sure ill be able to afford it. Some times i get so angry at her and frustrated when she is repeating and repeating, but i think mostly is because inside me im so angry at her for leaving me so unprotected and lonely i know its not her fault. Anyway mostly it makes me so mad how unfair how such an amazing and caring and kind person can be gone so slowly and in a horrible way, her dignity it was very important for her and i can see everyday how much it kills her to lose it and to leave my sis and me so unprotected and alone. She always use to say "I just want to se u and your sis have a fam and then ill be happy to go" so unfair.

    - karen

  • January 28, 2012 2:21 a.m.

    Its been 4 yrs since the diagnoses ( early onset Alzheimer's) at 54, my husband my rock my best friend .this just ciouldnt be! I remember the panic I felt then still creeps in now and again. I don't lose it as often ,I don't have time too . We farm 100 ac our lively hood . Now I farm , or I'm learning as well as running our officice and managing our farm i take care of the kids and my man. I honestly don't have time to panic .i feel. So lost , and alone. This is the hardest my life has ever been and I know it's going to get worse. He is now in advanced stage . I wish for no more tomorrows yesterdays please and days from past. I will treasure , maybe even more today's :) I'm just so not ready for tomorrow...... 54

    - Lynn

  • January 27, 2012 11:48 a.m.

    My heart aches for all of you who are dealing with your loved ones issues of dementia/Alzheimers. My parents are in their 90's. Dad is in a nursing home. He's safe and well cared for. My Mom is the issue. She is still functioning, but very, very forgetful. She needs to see her MD, but adamantly refuses. I have suggested that I make the appointment and we go together. She says she is "fine" and does not need to see a Dr. Her hygiene has declned in the past couple years, yet she still manages to cook, clean and pay all bills except medical. These, she does not understand and I help her with them. She still drives locally. She has "Sundowners". Calls me 3 to 4 times a week, telling me that my Dad has "left" her and she wants to divorce him. When I call her the next day, she is lucid and does not remember the call. She gets very angry when I suggest she is forgetting many things. There are 4 of us siblings. Only 2 of us are involved in her care and both of us live 45 miles away. The two who live closest are the least involved. I think she would be much happier and safer in the facility where my Dad is. She will not give up her dog or her car. She will not come to live with me. I worry for her safety and her quality of life. Thank you for letting me "vent". I wish the very best for all of you. Mom's concerned Daughter

    - Peggy

  • January 23, 2012 10:25 a.m.

    As I sit here reading all the comments my heart tears apart a little at a time. My husband has had AD for 6 years now. Was 56 when we started this journey. Day to day life is not what we planned for our retirment days, but God has blessed us with time together. I have quit my job as a teacher working with special needs children. It was getting to hard to work and come home to who knows what. Our family went through denial for about a year, but then saw how much he could no longer remember. He has to have me with him 24/7 and it gets very trying. I love him and couldn't think of ever leaving him, but I also understand there may come a time when I am no longer able to give him the care that he needs. We have taken him off all meds, because they were not helping at all and I felt we were wasting money on them. His Nerogolist agreed. He has gotten combative a few times, but this could be a reaction to my actions. I just pray for all the caregivers who didn't plan for this to happen to them. Hang in there, and know that you really are doing a great job.

    - Rosemary

  • January 16, 2012 6:31 a.m.

    I'm greatful to all of you caretakers for sharing your experiences, understanding and wisdom. It's been a comfort reading these entries.

    - andres

  • January 13, 2012 7:24 p.m.

    In my case the family is blended and I am the daughter of the AD patient's wife. My Stepfather (diagnosed with AD) has children who "do not see the symptoms" while my sister and I see them very clearly and are doing our best to both help him and our Mother. What do we do? My StepDad is calling his kids on a regular basis complaining about my Mother and me. "We are taking everything away from him". They are believing what they are hearing and don't see what we are seeing.

    - Diane

  • January 9, 2012 9:18 p.m.

    It gets tricky trying to deal with family of my spouse, and their attitudes. I get angry with their total lack of understanding and compassion, I get angry with their comments, their lack of help sometimes, when I think they should be helping out, and I need to let the anger go in this blog, its the safest place to do it, since no one in his family really understands what I go through on a daily basis. I know people here understand what I am talking about.

    - Gisele

  • December 29, 2011 4:20 p.m.

    "I've been doing this for 50 years"--this usually comes from my husband who has vascular dementia and Alzheimer's. He isn't able to plan out and sequence activities but gets pretty annoyed about this inability. There are times I react quite well and carefully manage to do the activity 'together'--but there are times when I have trouble coping with his frustration. I wish I was more perfect!

    - Josephien

  • December 19, 2011 5:52 a.m.

    I agree we need to be supportive of our loved ones in their dignity. It is hard as that loved one becomes confrontational and just mean. My father was diagnosed about four years ago, mom takes care of him and does the best she can with her internal resources, dad was a drinker when we were younger that made him mean. We took him alcohol out of the house as other health issues for both mom and dad needed. It's been almost a year since he's drank, now he's getting mean, he wants independence but can't remember to change his clothes from day to day or shower without cues. So when we don't just give him what he wants, he gets very mean. He wants to build a house in my neighborhood, thety can't afford to and mom doesn't want a house that she can't take care of herself, he called me all kind of names and told he disowned me then kicked me and my two teenage kids out of his house. How do you separate your childhood with this man and disease? I want to understand that he dissent really know what he is saying, but my flashbacks with him are hard to separate. Mom knows he's getting more difficult, but god bless her, he's her husband. The doctors are afraid to tell him he can't drive, mom and I are the only ones who have and he hates us for it. But I can't imagine him getting into an accident. How do you deal with the confrontational stage?

    - Kelley

  • December 4, 2011 7:58 p.m.

    Deb, You and I need to hook up on emails and anyone else with spouses in their 50's that have this horrible disease. I too feel alone in this journey.

    - Julie

  • December 3, 2011 4:30 p.m.

    I was so happy, not the right word but, to hear comments form other young onset wives. My husband of 35 years was diagnosed 52, started the journey at 50. I feel so alone, even at the suport groups with children caring for parent sin their 80's and spouses who are the same, they have no idea how unreal this is for us. We are now 58, he is moderate to late, I am workign for insurance and to pay for care etc. How can you, mayo, help us form a support system for young onset spouses? I have tried with the alz assoc and they have not helped. Can you help us find each other? I need to not feel so alone. Hugs to all. Deb

    - Deb

  • November 27, 2011 8:23 p.m.

    Sandi, Thanks for your advice. I also signed up for the caregiver newsletter. Do you still have children at home and are you working? How has your husbands disease progressed? Only answer if you want to. Take Care!

    - Julie

  • November 24, 2011 8:26 a.m.

    Julie: My husband is now 56 and we have actively been living with AD for 2 1/2 years now. He needed to quit driving right away because things had progressed to moderate level before I was able to get him willing to see speciialist. "things were fine, just a little memory problem, etc, etc"...we all know the conversations. I started this long process just after my 50th birthday. Not how life had been planned. Take the keys! Give him some keys that don't work to carry around if necessary. Keep reminding that the doctor said no more driving. Stress that this is because 'he wouldn't want harm to come to anyone else's daddy if there was an accident caused by him'...that worked well for me. Life is difficult with this disease, and truly I have come to see it is hard for each person involved. For those who like information another great resource is caregiver.com; it covers several chronic illnesses and is a good reminder that ALL caregivers are feeling the stress; has some wonderful hints in it also. God's blessings to each of you and HAPPY THANKSGIVING. I am still thankful that I have him here with me today, even though the day isn't that same as in the past.

    - Sandi

  • November 24, 2011 8:12 a.m.

    My son, 49, wife/2 babies, has the early on set of A D. At times I get so depressed. It is so hard to know what to do to help and I have shed so many tears. Thank you for your A D site and all the information, it is a big help.

    - Sharon

  • November 23, 2011 7:53 p.m.

    Yes, some of the family who don't live here (in the house with us or nearby) don't fully understand the stage my husband is at. It's been that way since he was diagnosed. Sometimes they make suggestions, meaning well, but just don't understand what my husband is and isn't able to do, or will or won't do. I am not as clear (isn't that usually the case?) about my own level of denial. I think I don't focus too much on what's to come, except in a pragmatic way. Sometimes I am not sure I will get through where we are now if I think too much about what's to come. Sue

    - Sue

  • November 22, 2011 3:50 p.m.

    We have been married going on 14 years now. I have nursed my husband through spleen cancer, stroke, kidney cancer, two hernias, prostrate cancer and now this fast acting dementia. His family does not come around to see he is in need to go to a nursing home. They don't even think of me as a person,just someone living with their father. They are in such denial, that they can't see, nor do they care that this is running me down. I am 63 my husband with dementia is 69. I do EVERYTHING for him but feed him, diaper 8 times a day. He can still barly walk. This may sound horriable to some, but I pray that things will get to a point to where I have to call an ambulance and I can let the doctor make the decision where he should go from there. I love my husband so much, it is so hard to see him decline, day by day. I sometimes believe that his family actually knows what is going on, they just deal with it by denying things, blaming me, calling me a bad wife for thinking to put him in a care center. I am not sure if I can make the decision again to put him in a home, I did it once, and like I said earlier, the family turned me in to the Adult protection Acency where the gal just shook her head, I brought him home, it was easier than to deal with all theflack from family. I only wish that I had some family support at the time I really need it, but can see that my health is of no concern to any of them even his sister. I am totally shocked on how his sister turned on me so fast.

    - Donna

  • November 22, 2011 2:03 p.m.

    I have come to terms with my mother's advancing dementia and physical decline. Unfortunately, she is aging and the process is not usually a pretty one. What is most heart wrenching for me is how the situation has destroyed the relationship between me and my siblings. Denial and anger have taken over when concern and love for our mother should be the primary issue. It will take a major health incident, I fear, to get her other children to recognize the fact that Mom shouldn't be living on her own any more. To make me the Bad Guy is simply unfair after all of the time I and I alone have spent taking care of Mom one-on-one...

    - Laura

  • November 22, 2011 1:51 p.m.

    Dear Julie: My husband doesn't remember anything the neurologist says so he asks me and I keep telling him. They just changed his meds today for the Grand Mall Seizure as the medicine he was on was making him nauseated. I did leave him today for about 2 hours because I had to go to the doctor. But, this was the first time. He's not on meds for dementia yet but he does seem a little better. Being a caregiver is like a full time job but now I feel a little more comfortable leaving for a couple of hours. I cry a lot. That seems to help me. My husband does understand it's a lot of work for me to remember everything. I do pray a lot. I don't think he's at the point where I need someone to stay with him when I'm gone yet. He has a daughter about 5 miles away but she has 2 kids and works. So, I'm it for now. This website and you are helping me. Thanks for writing back.

    - Leslie

  • November 21, 2011 9:37 a.m.

    I am reading this as I struggle to work and my heart goes out to all of you. I recently discovered this site and no longer feel so alone. My Mother has Parkinson's related dementia and has memory loss, trouble processing/understanding/talking etcetera. My Mom was always a very intelligent, organized, independent person and to see her going downhill is unbelievably difficult. I have a stressful corporate job and retirement is no where in sight. I take my Mom to my house from Friday night and drop her off at my brother's on Monday mornings (at least 1-1/2 - 2 hours on the road those days). During the week either my brother is able to work from home or have someone in to be with her during the day. Although I hold it together most of the time and always at work, I am so tired I am losing my patience in general, not to mention what it is doing to my relationship with my husband. I just pray to get through each day. I pray for each of you and your family members now as well. At least there is someone out there who understands how difficult this is. Back to work now. Thank you for the opportunity to vent a bit. :)

    - Louise

  • November 21, 2011 9:01 a.m.

    Dear Liz, I read your letter regarding your two sisters and how they claimed there was nothing wrong with your mother, but "used" her to claim her assets. And now are not there to help your (their) mother. My siblings I believe were in denial until mother spent last christmas in their presence. However, nothing was done to gather around to make life changing decisions for mother. She was a feisty and demanding woman most of her life. She wanted to be on her own and do things for herself. All the signs were there for a couple of months how she was declining, the burnt pots in the sink, the leftovers in the frig, asking me to help her pay her bills. I thought that when one of my siblings saw how she had declined there would be a family meeting with mother so she could see how we all gathered around to help her. I was the only one there for her. UNTIL, one day, she was gone! Someone of my siblings decided I was not good enough for her and did not take good enough care of her! They took her away from her family and familiar surroundings and within 3 weeks placed her in an Allzheimer's unit where within 2 weeks ashe was hospitalized and from there died within 2 months. This was a woman who had taken charge of her own health all her life. And, to be reduced to a unit for Alzheimer patients was demeaning! My opinion was not even respected for asked...I pray for those lost souls when family should gather round the caretaker and the patient.

    - MaryAnne

  • November 20, 2011 9:38 p.m.

    Leslie, I work several jobs and I am kept busy. I feel bad that now he is not able to get out of the house due to the driving situation. I took him in on Wednesday to take the written test and he didn't pass which I expected. Only one of my children live in town but she is going to school, working and a single parent. My husband is staying at home alone but I don't know when that will end either. The neurologist didn't think he should be but I don't have any concerns as of yet. Do you tell him all of the information the doctor told me? It's rather depressing so we didn't discuss this at the appointment. On top of this my mother has dementia now and my sister moved in with her. We went to stay with her this weekend and it breaks my heart! I have strong faith so that keeps me going but I know it will just get worse. Thanks for your support.

    - Julie

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