Caregiver Obsessively Negative

RNF12

I am having difficulty dealing with my dad's constant negativity and his constant need to bring up over and over my mother's Alzheimer's condition and how much it hurts that she is suffering from Alzheimer's. 

My mom was diagnosed with Alzheimer's at 52 years old. She has had it for 7 years now. She is still able to feed herself, go to the bathroom, dress herself, etc. My dad is her primary caregiver and he has been able to keep her at home. She recognizes my dad, brother, our spouses, and a few other family members. She still talks, although it's not as much or as often as she used to. She is happy and well cared for and always enjoys herself when she is with her family. We have been extremely fortunate given the diagnosis. 

However, lately my dad has been a nightmare in terms of his constant negativity. The past month it's like he has decided he can't be happy because my mother has Alzheimer's and he consistently brings it up. 

We told him "Happy Father's Day" and his response was "It's just another day. I am just glad to be here to spend it it with your mother, even though she doesn't know what day it is."

"Happy Birthday" his response "I'm glad to be another year older and get to experience having grandchildren, but it hurts your mother doesn't get to enjoy her grandchildren because of her condition."

I am having a hard time trying not to call him out on the constant barrage of negativity. I so desperately want to scream at him it is okay to be happy, it is okay to enjoy life, to enjoy family and friends. I want to tell him we are all deeply affected by the diagnosis but we are choosing to be positive and enjoy mom b/c she is still here and able to enjoy us, even if she doesn't remember later. 

We are grateful for his ability to be her caregiver and understand the pressure, but enough is enough. I don't and can't give him attention 24/7 and constantly talk about how tragic the diagnosis is and live in constant negative space. 

But I am at a loss of how to bring this up to him and how his behavior is affecting other without sounding insensitive or causing a fight and risk him saying "I guess I am just a bad caregiver" or "I guess my feelings don't matter."

I just have no idea how to handle this and have the family is choosing to ignore his comments which I think is why he is making them so much more frequently. 

Ginsamae

As a primary caregiver myself (I care for my 82-year old MIL) I can say that sometimes I feel that I am completely alone, even when surrounded by family, in dealing with MIL's illness. I find it comforting when someone will acknowledge what I'm going through. Maybe he feels that everyone else is glossing over what he is experiencing - especially if he is the only one with her 24/7. 

I wonder what his response would be if you were to ask him if your mother would be happy with him for being so negative about her condition - I'm sure that she'd want him to continue to live his life and find joy/happiness where it can be found (birthdays, sunny days, etc). 

Does he get out on his own without your mother much?  I'm wondering if someone could stay with your mother for a couple of hours so that you (or another family member) could have a lunch date with your Dad. Maybe he just needs someone to talk to about what he's going through.

Constant caregiving for someone with Alz/dementia is a very mentally & physically draining experience. I'm sure most of us on this forum have experienced the same things your Dad is at some point during our journey.

Jenflex

I'm with Ginsamae here...is burnout playing a role?  Is there a way that your father could get some respite? Self-care (and the difficulty of maintaining self-care through the demands of caregiving) is a major theme on this board, as I've read, and some people find this more challenging than others.  Some men have especial difficulty with self-care...it's contrary to many ideas of what masculinity "should" be. Maybe over-simplifying, but I'd start with trying to find ways to give Dad a break.

harshedbuzz

I feel like you need to extend your dad some compassion and grace around this.

Losing a parent to dementia is not the same experience as losing one's spouse. We expect to one day to lose our parents, but nobody marries with the expectation that their spouse will fall into a cognitive decline in the prime of their lives. It sounds as though your mom is pleasant in her presentation of dementia and that is a good thing, but even so she can not offer your dad the intimacy and companionship that defines marriage marriage- it's not just the sex but the inside jokes, the conversations, the person who "gets" you, who has your back and shares your history. When one person in a couple has dementia, they both live with dementia.

Given her age, it's likely they're surrounded by happier couples who are planning retirement, doting on grandkids, traveling, trying new restaurants and enjoying the life they worked hard to build which can be a bitter reminder of the losses caused by this disease to them individually and as a couple. In some ways I feel my mother's experience with dad's dementia was more profound than his. Sure, he was the one who was losing who he was but because of the cognitive shift and anosognosia (the inability of a PWD to recognize they are impaired) he didn't suffer in the same ways she did.

I wonder if he'd be less negative if he felt heard instead being blown off as daddy-downer. Maybe ask how he's doing and validate the justifiable pain and anger he feels instead of acting like he's a problem.

HB

mommyandme (m&m)

I think he’s needing attention.  He may be using her illness to get it.  I imagine validation and recognition for him would go a long way.  I think it does for me and I’ve only been doing 24/7 care for one year and with helpers.   Even so, I sometimes regress into feelings of “what about me”?  Just thinking out loud.   

Hope this day is peaceful for you and yours.

Quilting brings calm

Can you describe your dads typical day?  Is he the only one actually living with her and the rest of you just help out? Are  you going out and  about meeting friends for lunch, shopping when you want, reading a book. Watching your favorite show in one sitting? Are you answering the same questions 18 hours every day? Are you sleeping all night, every night?   

Your dad  needs a break- and not an hour or two.  He needs a week or a month. He needs to go on vacation and stick his feet in the sand and have a beer and a nap.  And again the next day and the next.   Men don’t expect to be primary caregivers,  they expect to be breadwinners until they aren’t. They expect their wives to outlive them.  They expect to retire and use their garage or workshop as a man cave. It’s hard on them. 7 years is a lot. 

towhee

Walk a mile in his shoes- isn't that the old saying? If you are only seeing your mom on social occasions you are not getting the full picture. There is a thread on the spouse forum today called "Alone in the world". I suggest you read a little of it.

 Many, many caregivers end up diagnosed with depression. Family members who are not full time caregivers have trouble coping. The unending nature of the disease will wear you down. It is good that you reached out here. Please reach out to other sources as well regarding the relationship between you and your dad, so that you can find a better way of addressing your frustration than wanting to scream at him. Alzheimers helpline might be a place to start. 1-800-272-3900.

Cynbar

I am primary caregiver for my husband with dementia, and I have to tell you, it is just awful at times. The biggest issues are the loneliness and the sense of loss. I am living with a man who looks like my husband, but there is nothing familiar underneath. No memories of our family life, no recognition of his grandchildren, no concern for how I'm doing, no conversation. We saved and had big plans for retirement, but all that went out the window. Add in the physical work --- I have to do everything I always did along with everything he did. It's exhausting and soul crushing. Amidst all this, most of the focus of everyone around us is on him. No one understands how hard it is to be a caregiver except another caregiver. Please, try to be compassionate and give him a little more attention, a little more validation for his feelings. He is suffering more than you are aware --- he's not trying to be a downer.

RNF12

Thank you for the reply. 

It is hard to even address the subject with dad. When you ask him things like "Dad, do you think mom would want you be this negative" he gets defensive or brushes it off. When you try to talk to him about "what response are you seeking from us?" to try to gauge what he needs, he gets defensive. 

He does get to go and do without my mom as much as I am able to help out. I work full time and have a new baby at home. I keep my mom every Sunday for him to attend Church. I try to keep her for a couple hours here and there when I am able, to give him a break. Between my brother, myself, and my aunt we have it worked out where Dad is still able to go and do things he enjoys where mom is able to stay with one of us, but my Aunt is the only one able to keep my mom for longer period of time (like a full week) because my brother and I work full time and have infants at home. 

We live in an area where there are a ton of respite care options and support groups, but getting my dad to utilize those options is increasingly difficult. It's not a monetary issue. I think it's more of a pride issue "I'm the caregiver".

I just don't know if he likes being negative and getting attention or if there is something else going on, but I am so aggravated at the constant negative and what I feel like is need for attention more than a cry for help. 

Marta

Oh, boy!  If those two questions are examples of how you approach him, I would feel OFfended, also.

Please read about validation theory and empathy.

Jenflex

RNF:  You have a small infant at home. If this infant was crying all the time, you would go looking for issues to fix and ways to soothe. If they didn't work, you'd enlist expert help.  Maybe Little Bit is teething, or has an ear infection. 

Now, imagine an ear infection that is causing your Dear Baby to be a handful, 24/7.  And that will never get better, only worse. And that it's not a Dear Baby, but your best friend from the best part of your adult life. And that you're as tired as you were after giving birth, but that you can't ever catch up on rest, because Dear One needs more, and more, and more.

Agree with the comments on walking in another's shoes. Part of being a good parent is being able to see the world through your child's eyes, so you can help them become a good, wise, skilled adult (eventually). You're doubly challenged in this, because you also need to see the world through your father's eyes, right now. 

I'm so sorry this is difficult, and I wish it were easier. 

dayn2nite2

I feel bad for your father if there is this little empathy in his own children that he can go to church once a week and do other things “here and there.”  I just feel like you of all people should have an inkling of what it’s like to have to care for someone all the time and instead you feel he’s “seeking attention.”  You should hope you don’t end up in the same situation someday.

Yorklady53

RNF, your dad needs to vent. I can tell you after being a caregiver 24/7 for my husband there are many times I pray to not even wake up in the morning because I know it’s just one more day of constant issues. I have a friend who comes for 4 hours a week but honestly I am so worn out with caring for him that I don’t even have the energy to go anywhere while she is here.

Your dad is negative because each day is the same old grind. The person you love is with you except they really aren’t that person anymore. I know in my situation, I have no one to talk to during the day. The only conversation from him is what’s for breakfast, lunch, or dinner. It is exhausting both mentally, physically, and emotionally. Your dad’s situation may be the same. If you were the one giving 24/7 care you may have more empathy towards your dad. You should be his support mechanism not his critic.

towhee

Oh My! You have a new baby, a full time job, and are still trying to help out your father several hours a week. Those are so many balls to keep in the air, how in the world are you managing?  Are you getting at least 4-5 uninterrupted hours of sleep a night? A good quality of sleep is so important, without that our emotional control starts to fray and our judgement is impaired. It's true that if we don't take care of ourselves, we can't take care of others. Is your husband helping out? Please take care of yourself.

I mean every word of this, I believe a large part of your reaction is stress related.

harshedbuzz

RNF12 wrote:

Thank you for the reply. 

It is hard to even address the subject with dad. When you ask him things like "Dad, do you think mom would want you be this negative" he gets defensive or brushes it off. When you try to talk to him about "what response are you seeking from us?" to try to gauge what he needs, he gets defensive. 

Well that there is tone-deaf AF. 

Maybe you should attend a few support group meetings. I'm sure Little Bit would be more than welcome to attend and perhaps meeting loving people like your dad whose dearest and the life they've built together have been hijacked by this disease will help you approach this with the needed empathy. 

M1

I know a lot of this sounds harsh RNF, but they are right: the last thing your dad needs is more criticism from you. Maybe he doesn't know how else to express himself. I 'm wondering if a professional geriatric care manager could sit down with your family and assess the situation, it might be worth the cost. He may need more help than he's getting but doesn't know how to communicate. Maybe they'd both be better off if she were in memory care where he could visit as the supportive spouse but not do the day to day. Just thinking out loud.....I don't envy you trying to deal with your parents and a new baby. I was lucky (sounds odd) that both my parents died sudden cardiac deaths.

Iris L.

RNF12 wrote:

 I am so aggravated at the constant negative and what I feel like is need for attention more than a cry for help. 

Need for attention IS a cry for help!

Be aware that twenty-five percent of the time the caregiver dies before the PWD.  Caregiving can be deadly due to constant stress.

Iris L.

jfkoc

I do not find his comments to be negative at all but I am certain there are more examples that add up to a negative picture.

My suggestion would be to really listen to what your father is saying and look for the emotions behind the words. He may be needing more TLC than your mother does which leaves you sort of caring for 2 not 1. 

It is a hard, sad and frustrating place for you but you can do some things to turn it around.

 Listen to your father giving him your full attention and  pay close attention to validating him and do a lot more hugging both virtual and actual.

I think you will be surprised by how much better both he and you feel. Let us know.

Birdies

Hi RNF,

My mom has Vascular Dementia (late stage now), and my Dad is her primary caregiver.  This is a very very difficult road for all involved.  It took me a while to understand just how deeply this has impacted my father, because I was blinded by my own grief as a daughter losing her mom.  I often think about how difficult and sad this would be if I was in my Dad’s place...  I can’t even imagine the pain of losing my spouse to dementia.  Try and put yourself in his shoes… it’s a lonely, sad journey.  And he is probably starting to experience some anticipatory grief.

When my Dad gets frustrated, negative or sad about what has happened - I validate his feelings and usually say “I know Dad, this really sucks”, or “I miss mom too”… you get the point.  But I always try and redirect by being positive, laughing and acting goofy - it does rub off.  

We are all trying to make the best of it……… it’s the only choice.  

Hang in there and support your Dad - he will need it, but he will probably never tell you he needs it.