New to all this, dealing the best we know how..need help

Harmonie

My mother was diagnosed with early dementia ( I don't give it a capital ) in early 2020 and further investigation was hampered by the shut downs. She and my father were isolated for much of 2020, aside from facetime and "through the window" visits. My father has congestive heart failure. They live together, alone. We three kids take turns caring for their needs, two RN's and myself. We are ready to give them in home care to assist. We have talked about that with Mom, but she is prone to fits of rage also at the mention of a care giver. She is even fiercely resistant to going to the doctor for evaluation and possible meds. Not that meds would necessarily work, because she takes them when she wants to and sometimes she won't, just because we ask her to. We are not experienced. We know the basics, redirection etc, but we need help. Also to take the load of my father, who deals with her all day and night. I say deal, because, aside from memory lapses and other symptoms of the disease, she is still fully capable of taking care of herself.

tramey50

We went through this too. Mom ‘fired’ every caregiver. We had to tell her anything that worked: 

‘They’re here for Dad not you” this one worked best.

‘They’re my friend and need a place to hang out’

‘She’s training to be a housekeeper’

You might contact your Area on Aging Agency. They have references, ideas and classes. Ours also offers in home people as companions, at a lower rate then agency caregivers.

Good luck.

Tracy

Lindsay22

Hi Harmonie, 

So sorry you are going through this, we all know how stressful it is. Depending on your mom's disposition could you try framing the caregiver differently? As a "housekeeper" or as someone to help care for dad with his health issues.  Perhaps she would accept the help if she didn't think it was for her i.e. "Dad's doctor has him on a very specific new diet and it's just so hard for all of us to manage the cooking and cleaning. This person is going to come 3 days a week and manage dad's diet and medicines". Sometimes parents respond to the authority of someone who isn't their child better.  If the caregiver were to say "OK Mrs. Harmonie, I'm getting ready to leave, I put away a load of clean towels, dinner is on the table, and here are your pills" she might just go along. And this type of help could go a long way to easing your dad's stress too. 

Harmonie

We tried that approach, she says:"I don't want a stranger in my house" "I do everything my own way, I don't need any help" yet she does'nt do it her way, she doesn't do it at all. She cooks sometimes but often forgets to eat. Anything you tell her has to be carefully constructed as to not trigger her feelings of inadequacy, bitterness about life, unhappiness about the inability to drive etc. When I told her the home health nurse was coming she was paranoid as if we had them come for her, repeatedly saying, not for me, why do we need them etc.. If we force a caregiver to come, it will have worse consequences as she will be emotionally and verbally abusive toward my dad while we are not able to be there. They are both still capable to sufficiently care for themselves with us trying to give her distraction and my father relief on our days off from work. We have a call out to her dr to see what we can do about the agitation and aggressiveness... maybe risperidone is an idea as I have read in some of these posts. I also have made an appointment with a neurologist in the hopes I can convince her to go on the premise that they need to see her before refilling her donazepil (which does nothing for the aggresiveness and agitation) we are at our whit's end.

Harmonie

Thank you, we tried all those but we are met with anger and hostility.

I will look into the Aging Agency, thank you for reaching out

tramey50

We also gave Mom Buspirone for anxiety as she started into sundowners about 4pm. Although it made her tired, it also relaxed and calmed her. This was a very difficult time. If nothing else, remember that there are phases and this is one. Things will change. This will pass and although there will be new issues, you will learn what helps and what doesn’t. 

Try to focus on good calm times. Enjoy her good moments as you learn. What works now might not work later, but you will get through this. 

No one can do this alone. It is heart breaking and soul stealing. Get support through alz assoc, church, or any other support you have.

God bless you and keep you. Tracy

LisaMGuthrie

New also; thanks for sharing.  I work full time in a time demanding profession; my DH was diagnosed in early 2020 and only recently have I felt unsafe leaving him alone - nothing has happened but episodes of confusion are quite striking, concerning and scary.  How do you know when it is time to bring someone in?  I am having trouble doing it all around the house; my DH does not initiate anything.  considering a visiting angel to help me with chores and help him at least do some exercise a few times a week??

May flowers

Harmonie, I wish I had advice regarding your mom. We did not have the resistance about doctor’s visits, but it definitely sounds like one is in order to get something to deal with the agitation. Maybe at that point she will be more open to the idea? What does your father think about having someone come in? If he’s on board, then maybe he can convince her. It is support for him as much as anything. 

Lisa, welcome, and sorry for the reason you are here. Every stage brings a new set of needs. What you describe regarding your husband is the point we brought my FIL to live with us last year. He was much worse than we thought he was when we were stopping by his house daily. Anyway, it wasn’t long before we decided he either needed a caregiver, day care or MC. I was running ragged trying to keep him busy and keep him from getting lost. When he wasn’t trying to get outside and walk for hours on end, he would sit and stare into space. 

My husband and his siblings opted for MC and it worked out well for a while because of the activities and socialization, at least at that stage. He perked up quite a bit being around his peers. In your case, maybe daycare would be a good option while you are at work? And for sure a housekeeper at least. My FIL is home with us again, after a fall, and is on hospice. We are going to have to hire a caregiver at least one day a week even with hospice. I cannot do it all, and I am home all day.

Harmonie

Thank you Tracey

Stuck in the middle

Lisa, I think it might be time for adult day care or other assistance.  An episode of confusion could come while he is doing something like cooking, so I would be reluctant to leave him alone.

More people will see and hopefully respond to your question if you start your own thread by clicking the "add topic" button on the home page.

Rescue mom

Lisa…my DH did/does not want anyone around the house, he could not do anything to help, and barely do a few basic things for himself. I got house help  by telling him it was help for ME, I needed the help. Once he got used to that, he would let them do a few—very few and nothing personal—things to help him. That at least eased my chores. 

Others have used other reasons, like a friend is down on her luck and needs a few days of work. (That didn’t work for me, my DH did not care about “friends in bad luck.” Nor did he need help, he said. But help for me was ok)

I worked full time, unpredictable hours. I loved my job. I had to quit. There was no way I could work that job, and care for him,  do everything for house and us,  without lots of help. I was supposed to be the super-competent manager. But he was no longer a partner. Not his fault, dementia.  But it broke me, too.

Not just him causing problems or danger, but when real accidents did happen —fires, busted water pipes—he did not recognize them nor respond. Its a blessed miracle he was not hurt, but we had major damage. The PWD may seem like they can dial 911, or handle something as usual, but an emergency blanks them out. 

Cameras can help watch, but 2 common problems are that the PWD doesn’t listen/understand even if told what to do, and that the person watching doesn’t see what happens fast enough or be able to get help there fast enough. Many people still say the cameras are worthwhile.

Not to mention wanting to clean the dog with poison, or OD on a strong med, thinking it’s a OTC med. or using a glue gun as toothpaste. Or bringing in spoiled food from outside garbage and putting it back in fridge. Etc. Etc. Long list, and most people here have one. There’s another thread right now, about how the unwatched PWD constantly gets into unexpected dangers.

I couldn’t find enough decent help to cover the times needed, and cost was a problem anyway. Adult day care is a godsend for many spouses who still work. Most people in my support groups say they could not hold a job plus caretaking and household chores/needs/planning.  So they used day care. Their SOs did not always like it at first, but that’s common and staff knows how to help them adjust.

This has gone too long. I’m sorry. But no one can do this alone 24/7 for long. You will need help. And it only gets worse. The sooner you can find help —day care, good home aides, family, etc—and get him acclimated, the better for everybody., 

And yea, if you start your own thread with your own questions, you will get more better responses. Now you’re kind of hidden below someone else’s different problem.

[email protected]

My parents live on a 10 acre estate in MA so immediately you think winters can be harsh there, right? Well my mom has decided she is not going to spend another winter in New England. She wants to go to Florida but my Dad is resisting. My Dad has alzheimer's, middle stages with random confusion that comes and goes so he is still pretty lucid. My mom has chronic pain, spinal stenosis, and moderate arthritis. 

We are trying to persuade my Dad to move and think about the future when it comes to his disease. For all those struggling with a loved one when communicating, the hardest part of this disease is reframing your words, deflecting from conversations that agitate them, and distracting them during OCD behavior. The other thing that's so hard is the narcissistic thinking, the hurtful things they say and the constant resistance. I am slowly learning but it still hurts, its exhausting and depressing. There are moments when my Dad realizes he's saying something but he still thinks he is in the right. You can't reason with someone who has Alzheimer's, you can only hope you will say something that will make sense to them and give them pause to think. Before my Dad loses all his lucid moments, I'm desperately trying to work with him to keep them both safe.

I struggle with how much to tell him about his diagnosis without scaring him but making him stop and think and make a plan. He did ask me to send him something to read which is a good sign but he has trouble with his vision and staying focused. I will send it anyway and hoping to find something here that will help him understand. I also plan to ask his doctor at his next visit to explain what's to come.

Any advice from those who have been thru this stage and moved into the next phase. How quickly did it happen? What should I focus on as the most pressing concern?

My heart goes out to all of you who are on this journey and struggling to get thru it.

JDancer

Kelly- I suggest you start your own thread to get more responses to your issues.

krabinskas

My mother is dealing with the loss of my father last year.  At first I thought it was grief but it seems to be more that.  She has had an MRI and PET scan and we see her neurologist on Thursday.  I’m worried what the doctor is going to say as I am scared of this disease.  My mom has been accusing my husband of doing terrible things and I just don’t know what to say when she brings these things up.  For example, she says my husband is calling her relatives and she wants me to take his phone away.

cindykga

Hi everyone.  I am doing research for my family in Texas (I'm in Georgia) looking for inpatient memory care for my 50 year old niece in San Antonio who was diagnosed 2 years ago with early onset Alzheimer's.  She has been living with her mother (my sister) since her diagnosis but she has progressed to the point that inpatient memory care is going to be needed soon.  I am having absolutely no luck finding information on facilities that accept patients that young.  Can anyone help point me in the right direction?

Rescue mom

Cindy and Krab….you will get much more attention and responses, if you each start your own thread with your own individual questions/issues. Look for the green box near the top right of each forum, it says something like “add topic” or “start new topic”. Click on that box, and follow the prompts. 

There’s lots of good advice here, and people who want to help, but they have to see/find your question. Now you are kind of hidden at the bottom of someone else’s s older thread.

cindykga

Thank you!

Dot9000

Krabinskas: There may be classes that you can take. They are very informative and help with handling your LO. When they start to go off, you need to gently change the subject. Say, "Oh, look at that beautiful bird out there!" or something like that. You can't argue with them, they just don't understand. It's hard, but you have to redirect and sometimes tell fibs to calm them down (for example when they won't go to the doc, you can say you are going for a ride). Contact your local Alzheimer's organization. They have been a huge help to my brother and me in dealing with our mom. The classes are well worth it (and they were free). Best regards. ♥