I'm new & caring for my dad w dementia

kschnauzer

New member
Dec 8, 2023
1
0
Hello everyone. I'm new to the group but not to the disease. I'm 58 and caring for my dad in his home. On weekends my wonderful daughter comes to give me a 24-48 hour break depending on her work schedule. My sister & her children come to visit occasionally & they do live 2 hours away but my sister told me since she's newly married & cares for her 1yr old grandson she cannot help care for dad. Her 2 daughters work so they have decided to see dad once and not come again bcz they don't want to remember him like this. I could say alot about that but lm not going to. That will be their karma to live with.
OK moving on dad is 88 lived alone until last Nov 12th when he woke up having a massive stroke in bed. For the last 4 yrs before that he had dementia ,CHF, a heart valve replacement, a Watchman procedure, a quadruple bypass, and Parkinsons, focal seizures, along w high BP & high cholesterol. But dad spent his whole life exercising and eating right. He is the first of 5 children to live this old. His father & 3 brothers died in their early 40s. His sister passed 2 yrs back. But dad's had alot of serious issues but he remained strong & fairly independent until 9 mo ago he had a seizure where he fell and hit his head w a brain bleed. Then Nov the stroke. While in the hospital the Dr's discovered he had a 80% blockage in his left carotid. They went in and cleared it out. After he came home his dementia kicked in hard he's now stage 5 going into 6. I moved in. We've been seeing Neuro, Cardiac, and his PC trying to treat all his symptoms. They put him on Keppra for seizures. But he kept having 1 a month. Til last week he had 4 seizures in 4 days and quits breathing for up to 3 minutes during them. He also has had 2 more falls not listening to me or my daughter trying to take off on his walker. Just last Friday night he fell backwards hitting his head on the dresser splitting his head wide open. I took him to the ER they put 4 staples in did MRIS & CAT scans. But he's not been himself in a long while but now he's like a 4 yr old child. At the hospital we learned the surgery to clear the left carotid has failed, it's starting to close off. None of his heart Dr's say there's anything left to be done now it's time for hospice.
So, l set up hospice and lm so grateful for the help. Dad was not sleeping at night. He was up every hr on the hour peeing or asking questions that made zero sense. So we were getting no sleep as well. I felt like l was going crazy. Dad has always been demanding along w adhd, add & major depression since l was a child. He's very morbid. It used to drive me crazy but now lm used to it. But what lm not used to is dad being mean or angry w me & my daughter. That's new. It's not like him. But hospice has set us up w sleeping medication & anxiety meds which it's only been 2 nights but lm in tears that we got real sleep w only 1 interruption. It's a real blessing for sure.
Dad's a Navy Vet he spent 8 yrs in 4 active w/ 4 i the reserves. He worked for Texas Instruments for 36 yrs as a electronic technician before retiring. He's really having a difficult time w this health decline. At times l think he knows he's running out of time and at other times he has this hope the Dr's will make him better. I just keep telling him today's not your day dad. Only God knows so let's keep trying to get on w/ living. I'm told the military VA has a caregiver/ sitter service if he qualifies. Going to discuss that w the hospice social worker.
I need advice on how not to lose my cool or what exercises l can do to regain my mental peace when all this gets to me. I'm easy going, loving and a empath so l feel his distress & confusion. Any tips on remaining calm and light hearted would be appreciated. Ty Kelly
 

Bfam

Registered User
Jun 24, 2017
11
0
Hello everyone. I'm new to the group but not to the disease. I'm 58 and caring for my dad in his home. On weekends my wonderful daughter comes to give me a 24-48 hour break depending on her work schedule. My sister & her children come to visit occasionally & they do live 2 hours away but my sister told me since she's newly married & cares for her 1yr old grandson she cannot help care for dad. Her 2 daughters work so they have decided to see dad once and not come again bcz they don't want to remember him like this. I could say alot about that but lm not going to. That will be their karma to live with.
OK moving on dad is 88 lived alone until last Nov 12th when he woke up having a massive stroke in bed. For the last 4 yrs before that he had dementia ,CHF, a heart valve replacement, a Watchman procedure, a quadruple bypass, and Parkinsons, focal seizures, along w high BP & high cholesterol. But dad spent his whole life exercising and eating right. He is the first of 5 children to live this old. His father & 3 brothers died in their early 40s. His sister passed 2 yrs back. But dad's had alot of serious issues but he remained strong & fairly independent until 9 mo ago he had a seizure where he fell and hit his head w a brain bleed. Then Nov the stroke. While in the hospital the Dr's discovered he had a 80% blockage in his left carotid. They went in and cleared it out. After he came home his dementia kicked in hard he's now stage 5 going into 6. I moved in. We've been seeing Neuro, Cardiac, and his PC trying to treat all his symptoms. They put him on Keppra for seizures. But he kept having 1 a month. Til last week he had 4 seizures in 4 days and quits breathing for up to 3 minutes during them. He also has had 2 more falls not listening to me or my daughter trying to take off on his walker. Just last Friday night he fell backwards hitting his head on the dresser splitting his head wide open. I took him to the ER they put 4 staples in did MRIS & CAT scans. But he's not been himself in a long while but now he's like a 4 yr old child. At the hospital we learned the surgery to clear the left carotid has failed, it's starting to close off. None of his heart Dr's say there's anything left to be done now it's time for hospice.
So, l set up hospice and lm so grateful for the help. Dad was not sleeping at night. He was up every hr on the hour peeing or asking questions that made zero sense. So we were getting no sleep as well. I felt like l was going crazy. Dad has always been demanding along w adhd, add & major depression since l was a child. He's very morbid. It used to drive me crazy but now lm used to it. But what lm not used to is dad being mean or angry w me & my daughter. That's new. It's not like him. But hospice has set us up w sleeping medication & anxiety meds which it's only been 2 nights but lm in tears that we got real sleep w only 1 interruption. It's a real blessing for sure.
Dad's a Navy Vet he spent 8 yrs in 4 active w/ 4 i the reserves. He worked for Texas Instruments for 36 yrs as a electronic technician before retiring. He's really having a difficult time w this health decline. At times l think he knows he's running out of time and at other times he has this hope the Dr's will make him better. I just keep telling him today's not your day dad. Only God knows so let's keep trying to get on w/ living. I'm told the military VA has a caregiver/ sitter service if he qualifies. Going to discuss that w the hospice social worker.
I need advice on how not to lose my cool or what exercises l can do to regain my mental peace when all this gets to me. I'm easy going, loving and a empath so l feel his distress & confusion. Any tips on remaining calm and light hearted would be appreciated. Ty Kelly
Sending hugs - only advice is to think of him as a child, people think kids are cute when they have temper tantrums and excuse them for saying mean things, just cause they don't know any different - Progressive dementia is like a baby growing up in reverse, learning how to communicate in reverse - I found that I needed to be like a detective to try to work out what he was trying to communicate and think of the right thing to say to stop the worry, which was usually what made him cross/mean. Remembering how I cared for my kids really helped - back to basics food, pain, distraction .... so hard when it's your Dad, but we had some fun doing silly stuff and just getting out in nature & the dog was a huge help! and music was a massive help, especially in the end - So important you get a break & sleep .... deep breaths! & maybe it is OK to lose your cool once in a while? .... and yes Karma - you should have no regrets, you are doing great x
 

Lawson58

Registered User
Aug 1, 2014
4,199
0
Victoria, Australia
Gosh, your dad has been through the wringer which means that you have to. He must be a tough old bird to have survived all that.

I think the one thing I have learned is that when my husband gets nasty, I never take it personally because I thought that it wasn’t really me that was at the centre of his attacks but his fears, his fears of what was happening to him, his fears that he might be dying and fears that he has no control of what is happening to him. Your dad must constantly feel ill.

It takes a while to train yourself to develop a skin thick enough to not let these things hit you in the heart. I also think once you have had a few good nights sleep you will feel more able to cope. And I am glad you are getting the help you both deserve.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,145
0
Kent
I need advice on how not to lose my cool

Will this help?

 

sheepfield

Registered User
Feb 4, 2024
126
0
Wow, thinking of you, that's a lot of serious illnesses as well as the dementia.
I'm also an ADHDer, I didn't meet the formal criteria for NHS diagnosis but I volunteer with an ADHD charity and I'm amongst kindred spirits 😊
Please do take very good care of you. As you can imagine, I have a hyperactive mind and body and like lots of support groups and things I can do at home like colouring in, which is so mindful and soothing. I've also benefited from medication and counselling. I've recently started new activities that are meant to be soothing for mind and body: cycling, swimming, yoga and tai chi. All of my hobbies now are mindful and active things to help me to deal with this caring malarkey!
 

Denomi

Registered User
Mar 16, 2020
13
0
Hello everyone. I'm new to the group but not to the disease. I'm 58 and caring for my dad in his home. On weekends my wonderful daughter comes to give me a 24-48 hour break depending on her work schedule. My sister & her children come to visit occasionally & they do live 2 hours away but my sister told me since she's newly married & cares for her 1yr old grandson she cannot help care for dad. Her 2 daughters work so they have decided to see dad once and not come again bcz they don't want to remember him like this. I could say alot about that but lm not going to. That will be their karma to live with.
OK moving on dad is 88 lived alone until last Nov 12th when he woke up having a massive stroke in bed. For the last 4 yrs before that he had dementia ,CHF, a heart valve replacement, a Watchman procedure, a quadruple bypass, and Parkinsons, focal seizures, along w high BP & high cholesterol. But dad spent his whole life exercising and eating right. He is the first of 5 children to live this old. His father & 3 brothers died in their early 40s. His sister passed 2 yrs back. But dad's had alot of serious issues but he remained strong & fairly independent until 9 mo ago he had a seizure where he fell and hit his head w a brain bleed. Then Nov the stroke. While in the hospital the Dr's discovered he had a 80% blockage in his left carotid. They went in and cleared it out. After he came home his dementia kicked in hard he's now stage 5 going into 6. I moved in. We've been seeing Neuro, Cardiac, and his PC trying to treat all his symptoms. They put him on Keppra for seizures. But he kept having 1 a month. Til last week he had 4 seizures in 4 days and quits breathing for up to 3 minutes during them. He also has had 2 more falls not listening to me or my daughter trying to take off on his walker. Just last Friday night he fell backwards hitting his head on the dresser splitting his head wide open. I took him to the ER they put 4 staples in did MRIS & CAT scans. But he's not been himself in a long while but now he's like a 4 yr old child. At the hospital we learned the surgery to clear the left carotid has failed, it's starting to close off. None of his heart Dr's say there's anything left to be done now it's time for hospice.
So, l set up hospice and lm so grateful for the help. Dad was not sleeping at night. He was up every hr on the hour peeing or asking questions that made zero sense. So we were getting no sleep as well. I felt like l was going crazy. Dad has always been demanding along w adhd, add & major depression since l was a child. He's very morbid. It used to drive me crazy but now lm used to it. But what lm not used to is dad being mean or angry w me & my daughter. That's new. It's not like him. But hospice has set us up w sleeping medication & anxiety meds which it's only been 2 nights but lm in tears that we got real sleep w only 1 interruption. It's a real blessing for sure.
Dad's a Navy Vet he spent 8 yrs in 4 active w/ 4 i the reserves. He worked for Texas Instruments for 36 yrs as a electronic technician before retiring. He's really having a difficult time w this health decline. At times l think he knows he's running out of time and at other times he has this hope the Dr's will make him better. I just keep telling him today's not your day dad. Only God knows so let's keep trying to get on w/ living. I'm told the military VA has a caregiver/ sitter service if he qualifies. Going to discuss that w the hospice social worker.
I need advice on how not to lose my cool or what exercises l can do to regain my mental peace when all this gets to me. I'm easy going, loving and a empath so l feel his distress & confusion. Any tips on remaining calm and light hearted would be appreciated. Ty Kelly

Dear Kelly,

Your strength and dedication to caring for your dad is truly admirable. It's clear that every step of this journey is both physically and emotionally demanding. I want to remind you that it's perfectly okay to seek and accept help, allowing yourself moments of rest and self-care. Your commitment to creating positive moments and celebrating small victories is a testament to your love and compassion. Remember, you're not alone, and reaching out for support can make a significant difference. Wishing you moments of peace and strength as you navigate this challenging but deeply meaningful path.

Take care,
 

scotlass

Registered User
Jul 9, 2023
191
0
oh Kelly what a terrible time both you and your dad have gone through, take all the help you can get , you really need some time for just you