My Mom is 55 years old and was recently diagnosed with dementia. She is young and it is so sad to see her not be who she used to be. On top of it she is very depressed. She repeats her daily routine: Wake up, eat, smoke, take a walk, sleep and repeat. She doesn't think the Dr is telling the truth and won't accept that she has dementia. I'm worried she won't get approved for benefits because she won't admit to her symptoms. I have a POA already so I could just apply for her, but we'll have to do interviews, etc. I think I just feel stuck in what to do next. She currently lives with me but I work full time and worry about her being home alone. I have two young children too so I don't have the time and finances to provide full-time care for her. I'm worried she is not in beginning stages too because she can't manage her finances, can easily get lost, eats the same thing every day (fish sticks, chicken nuggets, and french fries for every meal). She is so stubborn and refuses to talk about anything. As soon as I do she says she is too tired and needs to rest. Or says we can talk about it another day. I feel lost and frustrated. Anyone else dealt with this?
Start out by watching every Teepa Snow video you can get your hands on, on YouTube.
People with dementia cannot be alone all day beyond the very earliest stage. For example, it is wonderful that your mother takes a walk! Exercise is very healthy. But ALZ patients often start wandering. When I go out for a walk without a purse or ID I wear an ID bracelet with the number of a person to call if help is needed. I do not have dementia and I do not wander but I could fall and knock myself out or could be hit by a car, etc. It is just smart to have some helpful ID. Maybe you can get your mother to wear such an ID bracelet without telling her that dementia is the reason.
An adult day center can be awesome in your situation. They generally pick up and return the participants, often have breakfast items available, provide a nutritious hot lunch, have activities, and offer the opportunity of social interaction. Again, Mom doesn't need to go because she has dementia -- she can go to this nice social club so she isn't alone all day.
I think what to do next is to start the benefits application process. That would start with a needs assessment. We called social services for my mother. It is important that someone who knows her abilities be present at the interview. The interviewer knows that applicants often exaggerate what they can do, but they have to take their word for it unless they have other information. So when my mother said, yes, she could manage meals, we reminded her that she can't shop for food, she can only use the microwave, and it was getting harder and harder for her to carry the food to the table. She qualified for meals on wheels, but if we hadn't been there the interviewer would have had to write down that she could manage her own meals. My mother also said she could manage her own medications. Liar, liar, pants on fire! You get my point, I'm sure. Try not to antagonize your mother as you correct her, but make sure the interviewer knows the situation. You do not have to mention dementia at all during this interview.
All dementia is devastating. I think the early onset variety is especially terrible. Your mother should not have to be dealing with this so young! No wonder she can't accept it.
I don't see how her denying her diagnosis, would limit her benefits. They go by the doctor's diagnosis. Many patients with dementia have no idea that they have dementia. It's part of the damage to the brain.
I agree about being careful of believing what she says. Often they report false information, because they believe it's the truth.
You really need to be in the home with the person for a few days, observing them, so you can see how well they really can function. IMO, you need this information, so you can report what her needs are. Does she need assistance bathing, dressing, medication, etc. I would say that a professional assessment to determine what level of care she needs would be good, but, the person doing the assessment, can't go by what she says, because her info is not accurate. In my state, the doctor fills out a form, that the long term care facilities, (AL, Memory Care, and nursing homes) need in order to place her in the right level of care.
My LO's doctor told her straight out that she needed AL, due to her significant dementia. We both encouraged her to voluntarily go. Her doctor said do it soon and that she would not let it go. I knew it meant that she'd have to intervene, if she didn't enter AL. Fortunately, my LO did agree to go voluntarily and I signed papers and handled things for her as her DPOA and HCPOA. If she had refused......I would have consulted an attorney about applying for Guardianship. Because, if I didn't, I knew the doctor would report her to Adult Protective Services and they would have intervened. It wasn't safe for her to continue to live alone.
Just try to get her some assistance. They often send someone into the house to observe. They do talk to the person in my experience but they also talk to me (they talk solely to me now as I'm POA and she cannot remember much about her day and will often talk about the past as though it's today so isn't helpful). The person will come in and ask what she needs assistance with. Be open. They offer many services. Personal caregivers can come to the house and sit with her or walk with her so she isn't alone. They can come help with basic tasks just to make sure she isn't forgetting to do them. When my grandma first got help, it was because she was forgetting her food in the microwave or missing pills. Then she fell and broke her ribs so they completely took over helping her dress and bathe and making sure she ate. It was so helpful to have someone come in while I was at work and make sure she was ok. She actually ended up looking forward to it. The personal caregivers can come help her to clean up, get dressed, help her make food, do her laundry, etc. They can drive her to places such as doctor's offices so she doesn't get lost and can take her grocery shopping. They van even pick up medicines and go grocery shopping if the person becomes house bound. Perhaps just getting someone into the house to help her out and be with her is the route you should be going. See if you can't find a companions number, often times hospitals or doctor's offices have these numbers on hand and can make a referral to help you get the process started.
You don't.
That is part of the disease. You just learn to work around it as best you can.
At this stage with my mom, and we are still there, honesty is not as important as appeasement. I lie and withhold all kinds of information about which she can do nothing. I tell her what she wants to hear. It is not worth getting her all upset about things she will forget in five minutes anyway.
It is a different wavelength--but it is ok.
Salisbury is right, she's not going to accept this. Tell her whatever it takes to care for her. With my dads dementia I may remark that his memory is not as good anymore and he will accept that and agree but if I were to tell him he had dementia it would just hurt his feelings and make him mad, so I just don't go there. Nothing to be gained.
We have to fib a lot and not talk about plans for a doc appointment or any financial matters with dad. I do all the bills but dad thinks mom is doing it and that's fine. The lights stay on and he's calm.
She could live for a long time. She'll need memory care. You have to look at funding. She have money? Have you applied for Medicaid for her?
Lots to think about. I'm so sorry this has hit your family so early.
My story was much easier. Mom denied it AND also believed it enough to stop sneaking medications she shouldn’t be using and it CLEARED UP HER DEMENTIA. For now. So Mom won’t even TAKE the tests yet again. But they aren’t needed now - today.
Just do your best each day. That’s all we have - today
Good Luck 🙏
My family has had a generations' long fear of 'insanity' - for good reason, of course, from depression to bipolar. My grandmother was the first to develop dementia - after two long and horrible surgeries. (Anesthesia is not good for older individuals.)
My mother had issues with her mother, said she was just seeking attention. Then finally it was obvious. It ran its course over too many years, but she had much love and good care.
Then my mother suffered stress and depressions after staying in an unhappy marriage for the big car, big house. I think the abuse went both ways; fortunately, they had separate 'wings.' I lived 1,400 miles away, but we spoke regularly.
I knew she was isolating upstairs. She told me she was taking Benadryl every night 'for allergies and sleep.' (Google Benadryl/sleep aids and dementia; prepare to be very upset.) The ensuing memory loss was gut wrenching because she fought SO HARD.
Knee replacement surgery was the straw that broke the camel's back. The night of the surgery she pulled her IVs and wandered the halls. Personnel asked 'Why didn't anyone tell us she has dementia?!!'
It became common knowledge in their snarky little town; my mother rode a high horse, they enjoyed bringing her down.
She unleashed her fury on him and me. One morning she called early to scream "YOU'RE TELLING EVERYONE I HAVE DEMENTIA!!!"
That rage against me is the one thing she didn't forget. It ended the relationship.
I didn't lose my mother to an illness, I lost her to a word.
That said - why does your mother have to accept it?? How would you like it if someone kept telling you that you have one leg shorter than the other? You're only making it worse by shoving it down her throat.
Instead, try to find ways to help her and not belittle or scare her. Like suggesting she start making notes for things that need to be remembered.
I had to start making lists when I was 28 - but no one was constantly reminding me of my memory fading. It's just part of life.
Doctors (some) will use technical names as a scare tactic - don't fall into that. There is nothing wrong with your mother's routine - except maybe the smoking - leave her alone and just try to assist her. I gave my father a notepad. When he asked why, I told him that he worries about so many things and I was afraid he would forget a few. I 'advised' him to write down everything that he needs to worry about. Message delivered and for less than $.50
Look in your mirror and ask yourself, what would you want someone doing and telling you?
I was at Mother's yesterday and she repeated herself 3 times...and then would look a tad puzzled and say "Did I tell you this already?" I just say "yep" and I could see the look of confusion waft through her eyes.
What possible good could come from me telling her that she's "losing it"? She's 88, she has like, 2 friends, she's outlived everybody and will probably live another 5-10 years. It's VERY sad, because this is my future, too. Although none of my grandparents developed dementia, it terrifies me.
Just be gentle with her. When she repeats herself, ignore it. I think that my mom is struggling with certain things (reading or following a newspaper story and making sense of the context) but she can still do puzzles and just adores her Bingo day.
The best part, for me anyway, is that she is 100xs nicer than she used to be. I'm appreciating that aspect of this.
If you can get her to go to a senior day care or Alzheimer's caregivers day out program that would be good. Just tell her that there is a social group that you thought she would enjoy. If you bring a caregiver in at some point, tell her that it is a housekeeper to help you. At first some light housework is done, but the goal is to move into them being companions.
Regarding gaining benefits, the folks interviewing her have seen all this before. When they ask a question and she answers incorrectly you can shake your head and they will know that she gave an erroneous answer. If you must provide the requested information, protect her pride and dignity. Choose your wording well and with kindness.
I have found it very hard to 'lie' to my mom, but I'm getting better at it. My mom also has very bad scoliosis, and a lot of back pain, so we use it as an excuse for why she shouldn't do some of the things she wants (and thinks she still can) do - it helps. There are day care places for dementia patients, where she can go and be around others for several hours a day, giving you a break (which is extremely important).
Very best of luck!
A little off topic, sorry about that. It’s important to get respite help so you do not “disappear” as a caregiver at the sacrifice of yourself. Keep the job IF YOU MUST, but Self care must come first (mentally in your head) to be a good caregiver to ANYONE ELSE. Even just part time. You deserve time off from work AND caregiving to go for a walk or see a movie or whatever helps YOU. I read that Alzheimer’s and dementia patients can read body language no matter how impaired they are. I’ve tested the theory and it’s true. If you come home tired and grumpy from your long workday, Mom will feel guilty for asking for help. That won’t help matters. She won’t recognize that guilty perception, but body language is incredibly important. Don’t bring stress from work home. Go to the gym or something to wind down so you arrive refreshed with a genuine smile. It will make all of your lives and interactions a bit easier! Wishing you well.
Remember: just get through today as best you can. Including doing something for your own health and wellbeing.