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Ashley 1

Hi, I’m a 50 year old daughter living with my parents. Mom has not been diagnosed nor have we faced this head on but it has to be done. Main symptoms that are killing us are the up all night, rearranging everything all the time, thinks I throw away or hide her things , she obsesses over them. Always throwing everything out and “ clearing out “ only to constantly order online. Can anyone tell me what type or stage this might be an offer any advice? The stress on our family is killing us

M1

HI Ashley, welcome to the forum. There is a link to Tam Cummings' stages elsewhere, I'm sure someone will post it. Probably at least stage 4. The up all night is probably sleep fragmentation related to the brain damage, and medications may help. There are some treatable things that should be ruled out. Get her to her doc asap, with a written list of what you are observing, tell her Medicare requries it or she'll lose her insurance if you have to --"fiblets" are your friend in dealing with dementia. The paranoia about things being stolen is common, again probably at least.a stage 4 symptom. You need to get her away from any computer--too susceptible to scams. Reset your internet password or just remove the computer altogether, spill Coke on it, whatever. Freeze her credit, and remove any credit cards. If you do not have power of attorney, you should see a certified elder law attorney about how to get it, and how to qualify for Medicaid if potentially needed down the line for long-term care.

There are lots of knowledgeable people here, I'm sure others will chime in.

Marta

What steps has your father taken to get his wife diagnosed? Does he have POA? Is he also cognitively impaired?

Sandias

Ashley, your mother needs to see a neurologist. Her primary doctor can refer her to one. She NEEDS to be diagnosed to see what type of dementia she has so she can be prescribed the proper medication. Sounds to me she is suffering from sundowning and needs some meds to calm down. As far as stages are concerned, it differs among patients, and the types of dementia. Most likely, she's at the mid stage. My mother didn't rearrange or throw away things, but she was busy hiding things. I totally understand the stress you're going through.

How is your dad's health? Are you expected to care for him as well?

I do caution you, a big caution, to NOT become your parents' 24/7/365 caregiver. You give up your life, your job, your retirement savings, your own place, your friends, etc. I have read many horror stories of caregivers at the end of the caregiving journey (5-10 years or more), once their parents died, the caregivers were left homeless, jobless, pennyless, with no real job skills, no retirement savings, no friends, and in bad health due to stress and neglect. They felt lost and hopeless. Do not do this to yourself. If your parents love you, they will not ask you to give up your existence. If they do, they essentially feed on your life so they can survive.

DO consult with a certified elder law attorney. S/he can help get your parents' finances in order, and get them financial assistance from the government if needed. If your parents have the money, they need to pay you to care for them. The attorney can help prepare a legal care contract.

You need to go back to work, even part time, save for your own retirement.

MN Chickadee

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

This Tam Cummings assessment tool may help you figure out where she is at and where she is going. Getting her to a doctor will be paramount to this living arrangement. A sleep medication may help but you need one prescribed by a doctor who understands dementia.

SDianeL

get her tested asap. Make a list of what you are observing and ask her primary to refer her for testing. My husband is late stage 4 or early stage 5 and has the same behaviors. Rearranging things, throwing things out, losing things, agitation, anger, 3x he had hallucinations at night almost like sleep walking. If she's sleeping too much during the day, she won't sleep at night. I give my husband CBD gummy at night to help him sleep. The Neurologist just prescribed Respiradone and it seems to help him sleep through the night. Not helping during the day. Have another appointment with the Neurologist in 2 weeks to see if there is something else they can give him. Don't wait. Get a DPOA immediately for both your parents if they are elderly. Within 6 months my husband could no longer read and understand documents or sign his name. Please keep us posted.

Ashley 1

Thank you all for your comments and care. I’m trying to absorb it all now. We are very fortunate as they have long term health care in home when needed and we are well provided for financially down to my children’s children. My dad does have both wills and everything is covered and he does have her POA and every contingency covered. I am pretty much the primary care giver as of now. I have an older sister who lives about 25 min away and helps when she can. My dad has all of his cognitive abilities except for a little forgetting and hard of hearing.. This is just so stressful and I am glad I’ve found a place here to start .

Ashley 1

Thank heavens they have private insurance and we are all provided for and that won’t be an added issue

Ashley 1

I have already talked with her doctor as far as symptoms and meds. She refuses to take her Xanax etc or her pain meds. She was just put in gabapentin but doesn’t like it. These behaviors we’re always there to some degree as she is a covert narcissist and it’s been a hard time for 49 years

Sandias

Ashley - since your parents are in a very good position financially, please have them bring in in-home caregivers to do the caregiving, so you can go back to being a daughter, and not a stressed out, burned out, (and soon resentful) caregiver. Go back to your life. You can help by overseeing the caregivers, but not being one yourself.

Keep in touch with us here. Ask any questions you want. Vent anytime you want. You are understood and supported here.

harshedbuzz

Ashley-

Is you mom seen by a neurologist or memory center? In the context of a pre-existing mental illness, a high complete evaluation for dementia is especially critical. She needs bloodwork and imaging to rule out other causes of her symptoms that may or may not be treatable.

Since she has a history of mental illness, he psychoactive medication management should be overseen by a geriatric psychiatrist rather than a neurologist or PCP. Xanax can have a place in situational anxiety in dementia but I question gabapentin in the absence of nerve pain or seizures.

I second @M1's cautions around her access to money. I would remove her internet access so she can't shop online, get involved with scammers or fall for Nigerian princes. If needed put parental controls on the TVs to keep her off QVC and perhaps have mail delivered to a PO box to avoid circulars and catalogs.

HB

Ashley 1

Unfortunately she’s not yet in the place where she does not understand what is “ going on” if our WiFi is out for 5 min she is on the phone with the provider raising Cain etc. again a lot of this behavior was always there as far as ( control, narcissism, anxiety, won’t accept her anxiety and high levels of her wanting it done right now, her way or hell to pay) all of that is amplified by 100 plus now all the remodeling, painting for the 10th time, ordering amazing constantly. My dad in my opinion has got to put his foot down . He knows it and it’s causing so much strife in our home but he is the one ( in my opinion) that needs to lead this charge and we either tell her straight that we think it’s dementia or we keep doing this until we all loose it. She’s broken ribs, a leg bone, she has osteoporosis she has COPD.. she REFUSED any in home care when recovering from all the rib fractures and expected us to do it insisting she didn’t need help. I am the one who spoke up but without anyone backing me I’m at a loss.

thank you guys so much keep up the advice!

M1

Ashley, read other threads here: telling her it's dementia will NOT help and will likely only provoke more anger/resistance. It's common, a rookie mistake, and we've all done it (me included). Read about anosognosia--it's very common (70%) and means she really thinks she's fine.

She likely needs in-home care or placement. Research memory care facilities near you. Your father may be having his own cognitive issues? "A little forgetting"? I would be skeptical. His inability to act may be deeper than it seems. Does he hold POA for her? Do you have it for either of them?

MN Chickadee

Some meds can be crushed and hidden in a sweet treat like pudding or a smoothie or shake. This may be a way to start getting some of her behaviors under control. Consult a pharmacist on her current meds to see what can be crushed.

harshedbuzz

Ashley--

Sometimes, as an adult child with married parents, you have to wait for the other shoe to drop to get the spouse to realize their hair is on fire. The best way to do this, is to get out of their way and stop enabling them to avoid the obvious. You could do that by moving into your own place and let dad live with the consequences of letting a woman with a damaged brain and mental illness call the shots.

Perhaps your dad's "forgetfulness" is the result of stress, but it could also be a cognitive shift of his own that is less obvious to you because it's different than mom's. That should be checked out. Sometimes, 2 cognitive impaired people scaffold for one another that makes their situation look less precarious than it actually is.

In your shoes, I would research a plan B. You need a couple of acceptable SNFs for short term rehab after the next fall or hospitalization and a plan for mom's care should dad die first or be otherwise unable to be her primary caregiver.

HB

Sandias

Ashley, does your mother make threats when she's raising hell? That's your ticket to get off this crazy train.

If she makes threats, record them, then call 911, and tell them she is a danger to herself and others, and insist she be taken to the hospital for a evaluation. Once there, request a full mental evaluation. This is when they will find out her true condition, whether dementia or NPD (Narcissistic Personality Disorder), or...

Be sure to make a complete list of all her disturbing behaviors and inform the doctor, that way the doctor can have a full picture of what your mother is like, then she can be properly medicated. And more importantly, from the hospital, your dad must insist that they place her in a memory care facility. Do not take her back home. Must tell the social worker that it's "an "Unsafe Discharge" as no one at home is capable of caring for her." Rinse and repeat that phrase.

If you don't think you need to do this now, then keep this in the back of your pocket, it is THE fast pass to get her into a care facility where she needs to be.

Emily 123

Hi Ashley,

Sounds like 4 or 5. Is she forgetting conversations immediately?

There are some excellent books recommended by members over here:

https://alzconnected.org/discussion/65171/books-about-alzheimers-disease#latest

Getting your dad as much information about understanding the disease will be helpful. It makes it much easier to understand the behaviors, though no less frustrating--perhaps he can browse this forum, too? There's a dedicated spouse section.

I always recommend reading this--it's great.

https://www.smashwords.com/extreader/read/210580/2/understanding-the-dementia-experience/Medium,Arial,Black,White,One-and-a-Half

Letting go of the need to have the person handle anything beyond 'right now' is a critical part of reducing the frustration related to caregiving. She doesn't need to know that she has dementia. You'll only agitate her needlessly each time you tell her, and she'll forget it each time (but she'll hang on to her feelings around those conversations, which probably won't be good ones, and she'll stay mad at you). You or dad may feel the need for her buy-in with plans that are being made for her care, but very often a person with dementia lacks awareness of their issues ('anosognosia') and will be resistant. You can waste a lot of time and emotional energy arguing with someone who's lost the capacity to think rationally, because you're still operating within your prior parent/child or spousal dynamic. The thing is, she's got damage to her brain as surely as if she had a brain injury--outwardly she may look and talk the same, but inside her brain has atrophied, and she doesn't have the capacity to decide what care is appropriate or manage her thoughts and emotions. That means that she shouldn't be driving the decisions about what her care looks like. Going along with what she's saying, to keep her calm, is great. Sidetracking her or diverting her with fiblets will help. Medication management will help. In the background, make the decisions that best support not just her but all her caregivers. This is a progressive disease, though every person with it has a different path. Plan ahead. If managing her at home becomes too much, it's ok to look at alternatives. Think about what might be too much.

I don't want to be a doomsayer, but 'A little forgetful and hard of hearing' was how my mom started out. Apathy, and an inability to initiate action can be a signs of mild cognitive impairment, not unusual as we age. But..I'd assess if your dad's able to handle mom's behaviors effectively, or if they BOTH need additional support. See if he could use a hearing aid or a little pocket voice amplifier--that will make things easier for him. My mom hated the hearing aid, but would use the voice amplifier and it really helped her be more engaged. Good luck!

Ashley 1

Thank you so much this really touched me and spoke to me it’s like you are a fly on our wall