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How do I get past my anger and start to help
Mr Tom
Posted: Friday, February 4, 2022 10:57 AM
Joined: 2/4/2022
Posts: 1


New poster, and I don't know if this is exactly on topic but here goes:

I just found out on Wednesday that my father (age 81) has been diagnosed with Alzheimer's. 

But this is what I'm dealing with: he was diagnosed 8 years ago and didn't tell anyone. Not me, not my sister, and not my mom whom he lives with.  He still hasn't actually told me- I found out from my sister after they told her (she lives near them, I live in a different time zone).  I've always been close to my parents- we talk almost every week, and we were just out to visit them over Christmas.

He and mom were making plans to move- which she now has cancelled because they would be further from my sister, which she does not want if he has to go into memory care.

I love the man dearly, and I know that my time with the person he has been is growing short- but how do I get past the hurt of him keeping it secret for so long? I understand he is scared, and pride also factors in, but I need to figure out how to get to a point where I can still fully appreciate what time we have.

I also am concerned about the harm this has done to my parent's marriage. How is mom taking this? 

I haven't called yet because I'm still working through it, but we have our scheduled call on Sunday and I need to be in a better place to talk about this with him.

Thanks for listening.


ladyzetta
Posted: Friday, February 4, 2022 12:42 PM
Joined: 2/16/2017
Posts: 1709


Mr. Tom

Do you think he maybe did not want to give you something to worry about?  Please don't be upset with him over this just talk to both of your parents and let them know you are there for them. They need your love. You said your dad has pride and I am sure he probably does not want to lose that. I hope this helps your thoughts. Take Care. 


Joydean
Posted: Friday, February 4, 2022 9:07 PM
Joined: 10/10/2021
Posts: 778


Mr Tom, I totally agree with LadyZetta. His pride and not wanting to cause you pain. My husband has Alzheimer’s but in his mind there is nothing wrong with him. He knows he has problems finding his words but he has excuses for that too. So we never use the words Alzheimer’s or dementia. It doesn’t change anything and there’s no reason to cause him stress. I’m telling you this because maybe your dad doesn’t want to admit what is going on with him. 

This is just a suggestion, if you post under the caregivers forum you will get a lot more responses. Musing section doesn’t always get a lot of traffic. But you can post on any forum. Good luck on your call Sunday. Let your parents know how much you love them, they need that! 


Mrs. O
Posted: Saturday, February 5, 2022 4:12 AM
Joined: 8/1/2017
Posts: 309


Mr. Tom,  Please talk to your mom first. My husband had anosagnosia (didn't know that he had dementia), which is quite different from denial or the desire to protect someone from that knowledge. Whatever you find out, please be gentle with them both. It's an incredibly hard journey for all of you, and you will need to support each other.  I feel for you, and admire your willingness to be fully involved in your remaining time with him. My best to you all....

Mrs. O


GothicGremlin
Posted: Tuesday, February 8, 2022 4:47 PM
Joined: 4/7/2019
Posts: 392


Hi Mr Tom --

I'm echoing what everyone has said, but also want to add that fear is very powerful. My sister has early-onset Alzheimer's, and she was in denial about it for quite some time, and that denial was fear-based.  She was also fearful about the future, mostly fearing that friends and family would abandon her.  I assured her that that would not happen, and for the most part it hasn't.

Your dad may have had similar feelings.


robinja
Posted: Saturday, February 12, 2022 9:59 AM
Joined: 8/18/2021
Posts: 21


Hi, I am so sorry you are dealing with this. I suspect there are a number of factors at work here. First of all, people of our parents’ generation seem to be very private about their affairs - medical, financial, etc.  Pride and the desire not to be a burden to their family is likely also a factor. Then the disease itself - your dad’s brain is diseased and is not working properly. He may not remember or understand the diagnosis, and even if he did, his decision-making capabilities are diminished.  

Your mom is likely under a great deal of stress, trying to respect his wishes and dignity while at the same time dealing with the effects of this disease on your dad. I wish I had better understood what my dad was going through with my mother - despite frequent overnight visits from me and frequent check-ins by my brothers who live nearby, none of realized what my dad was dealing with on a daily basis. Your mother likely needs more support from all of you than she is asking for, depending on your dad’s progression.

My advice would be to not bring it up on your call at all but to work with your sister (and any other siblings) and your mom behind the scenes to figure out what you need to do to support them. You need to make sure you have your legal ducks in a row (financial and medical powers of attorney.) It might be a good idea to go ahead and step in on the financial side - thankfully we did take that stressor off my dad early on and it also gave us a clearer picture of what was possible for care in the future since none of us really knew much about our parents’ financial situation. 

You may also want to post or read posts on the Caregiver forum.  It is a valuable resource whether you are a caregiver from afar like you or the actual in person caregiver.  

Take care and know that you are not alone.

 


toolbeltexpert
Posted: Friday, February 18, 2022 12:14 PM
Joined: 4/17/2018
Posts: 768


Mr Tom glad you sought out a forum to ask for advice. Your in the right place. Posting in the caregivers will bring more responses.  If your dad was diagnosed 8 years ago that would mean things are beginning to  advace and your Mom has been carrying a burden and most likely she is gonna need everybody's help.  Your dad's brain is getting damaged and it's gonna get worse. Someone else said they never use the words Altzhiemers or dementia and I would agree that is great advice. Reminding someone that they can no longer do this or that isn't  helpful and cause them to get frustrated.  Now is the time to learn as much as you can. I would recommend clicking on the alz.org at the top and reading about  Altzhiemers. Teepa Snow does a great job of teaching in her videos on YouTube and I highly recommend watching those. Being a caregiver is extremely hard. Keep posting and keeping reading the posts here. As ed1937 says we are all in the same leaky boat. Hope you have a good call.
alicestevens
Posted: Thursday, March 3, 2022 10:57 AM
Joined: 3/2/2022
Posts: 6


Just talk to him , he might had his reasons.
abc123
Posted: Monday, March 14, 2022 2:32 AM
Joined: 6/12/2016
Posts: 2401


I'm sorry this is happening to your dad. This is a terrible disease that effects the entire family. Eight years is a really long time to hide a diagnosis. I'm guessing he's at least in stage 4 to 5. I agree with the others, your parents will need your support. Especially your mother. I know this is hard news to hear, try to be calm and get all the facts. You might feel better if you could go with him to see the doctor. Read as much as possible, it will help you. I wish you the best. I'm so sorry.
Jean loves wildlife
Posted: Saturday, April 9, 2022 12:16 PM
Joined: 4/1/2022
Posts: 10


Yes it hurts and is very hard when your father whom you love so deeply and talk to regularly appears to have kept something so important from you for years. He might be scared, in denial, or too proud to speak of it. But he may also not even recognize the diagnosis.  

Everyone else's replies are wise and good advice, so I am just going to add something from my brief experience - My DH was diagnosed a couple of months ago. Not sure his exact stage because we still need more info from his doctors. Probably early to mid stage based on what I read. But he too could easily go 8 yrs and not tell anyone else. He knows he was diagnosed with dementia and is taking medication to help it, but thinks it only has to do with being forgetful, doesn't realize that there are already significant problems with cognitive function and it is a progressive disease. I try not to react when he entirely forgets something we spent hours on that happened yesterday, or is completely unable to follow a simple train of thought, or watches a TV show 3 times because he can't remember he already watched it. I am starting to tell close friends, get ready to talk to our financial advisor, and figuring out the best way to tell his 3 kids who live in another state and don't see him often, especially with covid. 

DH has anosognosia - which I gather is common - truly has no awareness of what we all recognize as dementia despite the doctor talking to him at some length about the diagnosis. (He has forgotten.) As others suggest, I don't use the words Alzheimers or dementia with him - no point in upsetting him. Nor do I talk about his condition with others in front of him. I just deal with the moment and try to understand.

I wouldn't confront your dad with questions about why he didn't tell you. If he is like my DH, that will likely just upset him and he won't be able to process the information anyway. My DH can only process one question/comment at a time. He is unable to follow a train of thought that has 2-3 steps to it. He just gets confused. That is hard to accept when my DH was so bright and sharp, a scientist and teacher, etc. Similarly with your father, I'm sure. He has lost some or a lot of his mental capacity. Figuring out how to cope is a real adjustment for family members.

I think the best approach with your dad would be to talk first as gently as you can to your mom and sister - before your next call with your parents on Sunday. Tell them you are concerned about your dad and about them. Tell them you are hurting. They must know something is wrong even if they didn't specifically know of the diagnosis. Everyone is hurting in this situation, as you are, so try to be kind and understanding. It will be hard. But as you say, you are working towards ways to get pass the hurt and anger. 

I think you could tell your mom and sister how you are feeling and ask what they have observed and how they are feeling. Again I would not be confrontational with your father, especially on the phone. If you can begin a separate conversation with your mom and sister you don't need to have a confrontational conversation with your dad on the phone. When you call on Sunday you can talk about other things, the kids, pets, weekly activities, whatever you usually talk about. Make it a positive call for your dad.

Thinking of you and your whole family. This is the beginning of what will be a tough road. Wishing you well, and let us know in this forum how it goes.