New Here - Very Overwhelmed

SarahME4

Taking a deep breath here because I am not exactly sure where to even begin. My father is 75 and we do not yet have a full diagnosis but there is definite memory loss. My father has a lot going on, in addition to trying to figure this out, he also has cancer and is diabetic. He's experienced a lot of loss, as many people do. My mom passed away 14 years ago from breast cancer. My dad experienced the loss of his girlfriend for 7 years last year to a brain tumor. I am the youngest of his 3 daughters. All three of us do not live locally to him, which put a lot of strain on my older 2 sisters who were taking time out of work and away from their families to go weeks at a time to help sort things out for my Dad. He's had 3 hospital stays in the past 2 years due to various things, however, this last hospital stay made us significantly aware that he needed us to step in more. Had had come up with every excuse as to why my sisters couldn't come to his house and he would drive to them, and we figured out why. He was unable to get off the couch, his blood sugar was through the roof and we had to get his neighbors involved to even get into his house to get him help. Thankful for them. We got to his house and it was in a state of disarray, more than normal, we had to throw away furniture and do a deep clean. I'll spare the details but we tried to spare him of those details. There's so much to the story and I could write a book—as most of you probably can.

My sister and my aunt (his sister) currently have POA and have been very diligent in the past 14 years and more recently working on updating documents…because we've also moved him to a new state to me closer to me because I have more availability to help him. So paperwork and talking to attorney's not an issue. We've also already started to get him connected with the VA because he is a veteran.

The current struggle is helping him navigate these more emotional things. He has been told not to drive by medical professionals from the state he lived in and the medical professionals I have set up for him in the state I live as we work on this transition. It was sudden but necessary. We know he's mourning the loss of people and independence. He had a driving assessment last week and was told to not drive. I suggested we keep his car in our spare garage to keep it safe during the winter from the elements and that triggered him greatly. So we compromised and I'm holding on to the keys and I parked the car where he can see it from his apartment because he wants to see it. Well…Sunday was my breaking point. And I do realize this is his brain and not him but it doesn't make it hurt any less. He told me and my husband that if we didn't give his keys back he was done with us. I hung up on him and having spoken to him since because that crushed me. I called my Aunt who is closest to me and she has been going to check on him this week. Which has been helpful. But I know I have need and want to talk to him again. I just don't know how to face him right now without breaking down. He's worn us all down. I thought i'd handle it better.

Thanks for listening. Probably mostly venting here. But after reading some of the things on this website, it seemed like a safe community that may understand and may have some suggestions on how to help me emotions catch up with what I know logically. - Thanks, Sarah

SarahME4

I should probably clarify, he is currently in an Assisted Living setting. He refuses to consider letting my husband and I put an addition on our house so that he can live with us and he doesn't want people coming into his home. I know we're told we are doing everything to keep him and those around him safe. it's just hard.

SusanB-dil

Hi SarahME4 - welcome to 'here', but sorry for the reason.

Yes, it is very hurtful. and frustrating. and so many other emotions you can think of. He most likely has anosognosia. This is not denial, but rather, that he sees nothing is wrong. This is his reality and everybody else needs to get with his program. Agree - do NOT let him have the keys. It sounds like you already know that driving is out of the question and dangerous. However, do not argue. If you can, disable the car or go ahead and disappear it. Tell him something is wrong with it and the part is on backorder. Repeat as necessary. It is hard not to take it to heart when he says he is done. Try to keep in mind that isn't him, but this awful disease that is speaking.

Good you have paperwork in order. That is important. And who has HIPAA access? You may want to tell his doc that he is agitated. There are meds that can dial that back without making him zombied. MIL is on something for that and also anti-depressant, which helps a lot. She can still get, let's say, feisty.

Be cautious taking all this on within your home, and even an addition. It sounds like he needs more than assisted living at this point. Have you looked into memory care? So glad you and siblings are on the same page. My brother and I are, as well, with our mom, but a lot of threads here tell a different view. He's blessed to have you watching out for him.

H1235

I get what you are going through. My mom has said so many mean and hurtful things to me. It’s too bad that the last few years we have with our loved one have to be tainted. As far as the car. I wonder if it was taken away for repairs as Susan suggested (maybe he would take it better if your aunt or sister did it). I wonder if seeing it all the time is a constant reminder. I’m thinking out of site out of mind, at least eventually. Dementia is awful!

SarahME4

https://alzconnected.org/discussion/comment/231392#Comment_231392

Thank you. All you have said is very affirming and helpful. I do feel like at this point I don't want him living in our house. It's good to have the separation since I have small children.

I will definitely ask the doctor about the agitation. That's a good idea. I was going to suggest something for depression. I wonder if it'd be similar. My sister who has POA will be visiting after Christmas so I'm going we can make the car "disappear" while she's here. -Sarah

SarahME4

I'm sorry you're going through this too. It feels very unfair.

towhee

Welcome SarahME4, though sorry you have to be here. Stopping driving and moving them into a safe environment are the two hardest things to accomplish, and I think sometimes with men the car is the worst. Your family has accomplished both of them and without your relationship to your siblings and aunt imploding. I know it is still hard and will continue to be so. Do look into anti-depressants for your father. As well as being for depression, they are also prescribed for agitation, as often depression in the elderly shows up as anger. This time of the year is hard on people, even those without illness and dementia. Please take a little time to pamper yourself, that is important also. You might want to check and see if your father's appetite is normal and general health is ok, sometimes constipation or a UTI can ramp up the anger. Blame the no driving on the doctor, the therapist, or the insurance company, his blood sugar not being stable, anything where family is not the bad guy. The person with dementia will be most angry with the person they see most often and trust the most, because unconsciously they think they do not need to maintain filters with them.

Unless you financially have to, I would not bring your father to live with you. Right now he has a little bit of independence where he lives, and there is some space between you. If he does have dementia, he will need a lot more care and it would be very hard to take care of him and children too.

SarahME4

https://alzconnected.org/discussion/comment/231452#Comment_231452

Thank you so much. I can't tell you how this helps me know that we are making the right decisions. We've had his mail forwarded to my house, per his request, so I asked my aunt to come get his mail yesterday to take it with her for her visit. I also asked her to take his keys since she and my oldest sister have power of attorney. That was a huge weight off of me. She hasn't told him she has them but did talk to him about how upset I am and to stop calling us about the keys. She was hoping he'd call me to apologize. I told her I don't expect him to apologize. It's just not something he can not process right now. And I can understand why he us upset. I just needed some space to figure out how this has been affecting me and my family. I just really needed this week to reframe. I'm not going to argue. I'm simply going to tell him, again, that it's not me that is doing this but the doctors need more time to get a good grasp on what's happening with his brain and that my aunt and my oldest sister, as his POA's, can be the ones he talks to. He'll probably give me a reason to just slide him the keys without anyone knowing and i'll remind him that he has been such a good father and taught me to be honest and tell the truth. So we'll just ride this out. My aunt got him an IPAD, he did not remember that already had a tablet. Which is fine but she asked me to help him set it up. So i'm going to go over with that in mind and I can always leave if he gets too aggitated. He's where he needs to be. A friend recommended I read a book called Keeping Love Alive as Memories Fade: The 5 Love Languages and the Alzheimer's Journey. So far, it has been helpful. Although it is from the perspective of a married couple at this point, i'm keeping an open mind on how to apply it to a father/daughter relationship. It's so heartbreaking.

-Sarah

SusanB-dil

There are several books that are helpful, and there is a thread on that in the 'I am caregiver' forum. 'The 36-Hour Day' is one, and I derived a lot from Wendy Mitchell's book 'What I Wish People Knew About Alz…'

The keys are 'lost'. You can 'help' him look for them. Agree - he will not be able to process an apology. MIL has no empathy now, and it is very sad. Can get downright nasty with me because she has no idea who I am. Mom was a nurse with a master's degree and MIL was an elementary school teacher. It is heartbreaking to see these two vibrant women in such a situation. I am so glad I knew MIL before 'this'. I've told DH that if MIL in any way knew how she was now, she would be mortified. my mom and I were never close, but 'this' is still devastating. mom thinks I am her sister. She's nicer to me now. I should not find that amusing…

Rule #1: Don't argue with a PWD. Rule #1: Must take care of yourself. Rule #2: See rule #1, both of them.

psg712

Sarah, I know how it hurts to have a beloved parent angry at you for doing what is necessary to keep them safe. So hard.

Agree with what others have said, in particular 2 points: it would be good to check on options for memory care. And it is also good NOT to bring him to your home. I greatly respect those who provide care in their homes, but in your situation, with small children, you have to consider their best interests as well.

Your dad's needs will only increase. At some point (maybe now) he will be unable to stay at home alone. He will also not be able to be away from his caregivers in a separate area of the house. Someone will have to be with him all the time, on alert even at night to be sure he doesn't wander or hurt himself. You will need to dementia-proof the house (harder than baby-proofing, in my experience). And your kids will get to watch the daily challenges of agitation, incontinence, wandering, the deconstruction of his identity and personality in the space that should be safe, physically and emotionally, for them.

I've been there, moving my mom from out of state to be close to me. We considered moving her into our home. We had cared for my MIL in our home, but she did not have dementia. For several reasons, we decided that AL was best. Within two years she needed memory care. Of all the reasons we chose facility care over having her at home, the most compelling for me was the effect on my young son. In hindsight, this was the right choice for my mom and for our family.

scoutmom405

Lots of great advice. The VA has been a huge blessing for my FIL & me. They may be able to help with memory care.