Cognitive impairment and memory loss diagnosis. Coping?

Jdbug

HHi. My dad has not been diagnosed with alz or dimentia but has been diagnosed with cog. Impairment and memory loss.  He can still do many things but writing and communication are difficult sometimes.  Hes has days of worry, agitation, pacing, a feeling something is off and worrying about someone taking advanyof him.  I have quit my job and moved to come home when he had a high stress situation that had him in such bad shape he was experiencing depression and a suicidal feeling.  Yesterday he asked about what my contribution to bills would be and he felt it unfair he should pay all the bills.  I let him know my contribution is being here for him now and that I can't worry about that issue until time passes, i move and get a job.  (We are ok financially). He saw me updet and that made him unhappy and pacing started.  I spoke to him and he felt better.  Im posting honestly bc my whole life has changed now and in short time.  Sometimes I feel ok. Others I am not holding u well with all the needs over last months.  But I did feel some resentment that after all I did he was just thinking about me like the other sponge people in his life.  I deserve not to feel like crap for all I've done.  How do you know when they're saying what they mean? How do you know when they probably don't know?  It is really challenging and we've also had the stress of a gf who was trying to take advantage of his most unhealthy moments to promote her agenda of marriage which she'd not acheved in previous 15 years.  Yikes!  I am a daughter trying to learn when to be a daughter, when to be a caretaker, how to know what to do.  I wish i had a sense of humor about it.  I am also an only child and we live rurally so its isolating.  Are there support groups online you suggest? I hope its ok to say all this hete. I hope its anonymous.  Did anyone start with this diagnosis too?

Iris L.

Welcome Jdbug.  Was he diagnosed after a thorough evaluation by a neurologist?  You might ask about a prescription for Aricept or Exelon patch to help his memory and speech.  Note, these meds are not curative but may help with symptoms.

Iris L.

MN Chickadee

Many people start with such a diagnosis. It could be his cognitive impairment has progressed into dementia, it's not like there would be a black and white indicator or a certain day that happens. Is he under the care of a doctor? Seen a neurologist? I would inquire about a medication for his anxiety. It may take the edge off and make life much better for him and for you as his caregiver. He sounds unhappy and there is no reason not to treat his mental health if possible. This is common, I would say nearly all us on these boards have had our LO on a med for depression and/or anxiety especially in the earlier stages when the person is somewhat aware of what they are losing, that something isn't right. It must be very scary. 

As for his comments that make you resentful, I get it. I remember when my mom was in the earlier stages of dementia, early stage 5 probably, and it was always like that. Comments that stung, caught me off guard. She disregarded my feelings. She didn't act like my mother or someone who cared. No filter. This was the disease talking. It was hurtful in the moment but I learned to let it roll off. Dementia is not just memory loss. It affects absolutely everything the brain does, including judgement, executive function, emotions, everything. Some people are combative, some scream or cry all day. It can manifest many ways. Indifference to others is extremely common. You don't know exactly when they go from "meaning it" to the disease talking. I would say as long as you know something is going on like cognitive impairment diagnosis, assume it's that. There is no other way to proceed. You will drive yourself crazy wondering if he means it. You will never get an answer. He will never thank you. He can't anymore. It sounds like his brain is now beyond  comprehending the magnitude of the situation, his need for help, and the sacrifices you are making. Just chalk it up to his brain damage and move on. Develop thick skin. Keep your eye on the long haul goal of keeping him safe and your job as caregiver. Use therapeutic fibs to keep him happy. Sure dad, I can pay some rent. I'll get on that next month. Let him forget.  Rinse and repeat.  Hopefully you have some good memories of years past to sustain you. Hold those close to your heart as you move forward with this new version of dad. The Alzheimers Association near you likely has some support groups online if you contact them. Is there a city nearby with adult daycare or other resources? Some respite for you will be essential to doing this long term.  

Jdbug

OOnly diagnosed with cognitive impairment and memory loss by reg dr.  Unfortunately my leave from work in another state will end before the first available appt with psychologist and the neurologist appt isn't available till September.

Jdbug

YOur words are a balm.  Thank you.  I don't think my dad would want carers in the home yet.  I can still leave for the day which is a blessing right now.  It is hard like you said knowing when its him or the brain saying stuff.  I feel like I make very little progress getting myself support.  Im in a bad way right now emotionally.  Very tired and experiencing sadness at thought of what my life is going to be like. Ive changed everything to be here.  As only child I feel like I have no support yet, though I make attempt to connect I get tired and overwhelmed to do it.  I have got to find a community here.  Its isolating being outside of a town. Thanks for your input.

SusanB-dil

Hi Jdbug - welcome to 'here'...   sorry for the reason, but a lot of helpful advice and folks here.

Totally agree with what's been posted.  Some wise folks here.

one thing that does come to mind is that you need DPOA and HIPAA acceptance in place ASAP.  Are most of his bills on auto-pay, so don't need to worry, there?  and as Iris mentioned, he should see a neurologist.

If his behavior toward you is out of character, you know it is not 'him'.  None of this is easy, and some is downright hurtful.  Hang in there.

caregiving daughter

His judgement is impaired. He loves you and is so fortunate that you are at his side although he will likely never acknowledge this. What worked for me, when hurtful comments were said, was to pretend like I was a professional caregiver. I notched up in kindness and removed myself from emotions. It will take a toll but you have to remember that your judgement is not impaired and you know you are doing your best. I would recommend getting in a support group. This board helps but live or even a couple is better. If you have already tried and didn't find it a fit, try another one. I have also used the 1-800 number in a couple acute situations. Our thoughts are with you.

Fairyland

Hi Jdbug

hi from an “only” in a similar situation.  I find from my reading of forums like this that some of the problems people have seem to be caused by having interfering unhelpful and or greedy siblings, but I also understand the complete isolation and exhaustion feeling of having the weight of the world on you.

I’ve been with mom for a year today, working remotely and ignoring my own family which has been especially to the detriment of the youngest one. The main things I have had to get my head around is that ”old mom” is mostly not here, doesn’t respond to logic or retain things like she would have a few years ago, and cant make any decisions beyond saying “no” -   and I need to improve my acting skills to be upbeat etc or it makes matters worse.  Now I am surprised when she does remember anything!  So that was a change I could make in my own attitude- it was really really hard to say goodbye to my parent, in a sense, but accepting that has helped.

In fact she has improved a bit when I look back, she has likely vascular dementia not Alzheimer’s, so it progresses differently, and no drugs would help slow the progression, but with me providing scaffolding she is less stressed I think, so had some cognitive reserves and healing after a stroke. That took a few months for me to realise she was a bit better. So my point is,  knowing better what kind of problems you are dealing with may help.

She doesn’t have much anxiety or depression so we haven’t pursued psychoactive drugs, but I would be straight on to the PCP if I thought they were needed.