Understanding Family Struggles Amidst a Dementia Diagnosis, de ni al (dĭ-nī əl)n.1. A refusal to comply with or satisfy a request. 2. a. A refusal to grant the truth of a statement or allegation; a contradiction. b. Law The formal challenge by a defendant of the truth of an allegation made by the plaintiff. 3. a. A refusal to accept or believe something, such as a doctrine or belief. b. Psychology An unconscious defense mechanism characterized by refusal to acknowledge painful realities, thoughts, or feelings. 4. The act of disowning or disavowing; repudiation. 5. Abstinence; self-denial. Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature s way of letting in only as much as we can handle. Elisabeth Kubler-Ross Why we might be in denial The information provided by medical providers is not complete No one uses the words; such as dementia or Alzheimer s disease Initially the good days out weigh the bad days More apt to have good days strung together Limited time with the person having trouble 24 hours a day can make the concerns more obvious quicker or not!! A true hope that the memory concerns will get better or simply go away Fear of the future Others don t listen or minimize concerns
Some of the leading reasons a family seeks out of home placement are incontinence, wandering and difficult behaviors. What friends and family see and believe No one wants to advertise that sweet mama is actually not so sweet anymore. When this is my reality Things a Caregiver might not want you to know:
Some of the leading reasons a family seeks out of home placement are incontinence, wandering and difficult behaviors. What friends and family see and believe No one wants to advertise that sweet mama is actually not so sweet anymore. When this is my reality Things a Caregiver might not want you to know: Sometimes I am so overwhelmed/sad/mad/angry with my loved one I just want to walk away Some mornings I cry when I reach over and realize my loved one is still breathing I promised I would never put my wife in a nursing home and I don t know what to do because I can t take care of her anymore I can get so angry that I can t do what I want to do anymore I just wish she would die does that make me a bad person? Sometimes I threaten my mom with putting her in a nursing home if she doesn t do what I say One day I was so upset I thought about running him over with me car.i would never do that Sometimes my husband is so demanding in the bedroom I feel violated I don t eat because she won t eat I know my husband shouldn t drive but when he drives around it is the only break I get Is it wrong of me to wonder what about me I am tired, really, really tired My wife hits me all of the time, but I am afraid if I tell someone they will take her away from me I haven t been to the doctor for two years, I can t get away to make it happen I feel guilty asking someone to take care of your mom while I do something I want to do I know my husband is an alcoholic, but if I give him two beers at night he will sleep
What do you see here? What about if we looked at the same picture this way? Unprepared caregivers: It s hard enough to help a loved one who is confused (especially) when you are confused yourself about how best to help them. Green Bay, WI With my hubby I didn't tell anyone he has Alzheimer s until his behavior made it necessary. I tried to let him live as normal life as he was able and I kept his world small so he wouldn't become confused and agitated. Also when friends and family find out it's amazing how almost all of them disappear. Anonymous What happens when we are in denial We don t get the help that is needed We don t start making the plans that we should be making Increased caregiver stress Potential safety issues Unaware of supports that may be available (Social,financial, emotional, etc.) You can t pretend it s not there. Phyllis June on why denying the existence of Alzheimer s is unproductive.
Three Places. Doctor s Office Court Proceedings and Out of Town Family Combatting Denial Use the words.alzheimer s disease, dementia.remember when Cancer was the C word? Follow up, follow up, follow up Encourage physicians to make referrals for education and support.dementia Care Specialists, ADRC, Alzheimer s Association, Alzheimer s & Dementia Alliance of Wisconsin Ask do you understand what the diagnosis means? Educate on the discussions people with new diagnosis should have with their family (Healthcare, Future, End of Life, Living situations, driving, etc.) *Check in specifically with caregivers, they may be completely blown out of the water and have no idea what to even ask. *Be careful about too much reading material we can sometimes hand out a bunch of brochures, etc. and not connect with what is really going on *Respect the fact they may not be ready, give them permission to reach out when they are ready. *Don t minimize things yourself Why it Really Matters. When a person is diagnosed with memory problems, MCI, Alzheimer s or other Dementia it is time to have those difficult conversations now when that person is able to have an honest discussion about what they would like Did you know that your mother has dementia? Sexuality/Intimacy and Dementia My wife comes on to all the time and then changes her mind My husband wants to make love constantly and frankly I am just too tired, but I am too embarrassed to talk to anyone about it Can you tell me how I can say no in bed at night I am really scared because my wife has told people that I attack her at night, and I don t I am afraid they will take her away if I tell the doctor My Mom and Dad were married for 50 years, and now my mom is holding hands with a man at her Assisted Living Facility. I don t know what to do. I facilitate a support group, the subject of sex never comes up, I am not sure it is something we should talk about
On behalf of all of those who may not be in a place to say thank you Thank you for all you do to provide support to those living with dementia and their families. Even those of us in denial, we will get it eventually. Cori M. 1900 Center Avenue, Janesville, WI 53546 608-741-3615