I was a caregiver for my dad with AD, now it is my husband

SallieMarie

New member
Aug 22, 2019
1
0
I'm glad to have somewhere to post my thoughts as I am well acquainted with the disease due to my dad who is now dead, passed away from Alzheimer's Disease in 1997. He spent his last 5 years in a nursing home for AD. My dad had fallen on me as I worked on an art project for my church and to this day, I have back trouble which sometimes has me in a wheelchair.

My husband now, post prostate cancer survivor having had surgery, which was now over 2 years ago, has what appears to me to be the same thing my dad had. But he also has a narcissitic personality and has through the years done many things to me, acting out of his dissorder which appears to be hereditary as his father was also like this. It isn't that he does not have some good qualities, but he can and has been dangerous and seems to find this behavior rewarding.

He covers for himself so very well, and it is hard to tell whether his apparent memory issues are not a new means of finding a new way to be able to scare me to death or get away with injuring me.

My dad was a very soft-spoken and kind man but with Alzheimer's, a man still has a big body while his mind takes flights of fancy into dementia. This big body can hurt even when it was not done on purpose.

The difference with what my husband's behavior is telling me, is that it may be on purpose or he really has two conditions.

He is a Navy Vet and is retired so we have access to the VA for healthcare for him. Our middle son works for CalVET in an administrative capacity. This son is also partially dissabled from injuries he got when he was on board ship as a Damage Controlman. So I really have to carry this mantle of my husband's problems all alone. My son has IBS and has been hospitalized many times for it, having rescued a man who fell into the ship's bilge. He contracted hepatitis, and though that was cured, has had dreadful IBS since then. To share with him the stress I am under could put him in the hospital. His wife is wonderful, but it is not her father. And she has disablities from the Army herself and is a full-time art teacher for elementary students.

My eldest son is second in charge of a manufacturing plant making trains for the under ground commuter trains in LA. He works 60+ hours, has one son with his wife and has himself, back issues. So he can't help and the youngest lives in New Hampshire and my husband and I live clear across country from him.

My husband has recently taken to turning left in front of fast incoming traffic and with me as passenger, I'll die first. I think that may be his idea. He's done this twice in the last two weeks. Both times I end up with diarrhea from the stress and then I can't sleep and this last time the stress with my back, and I spent time in the wheelchair. We've moved lately so I've done more lifting than is advisable but that is the nature of having to move.

My husband can hide his narcissism from psychologists and psychiatrists and seem to be a very wonderful person. But to let you know that my father-in-law who died of Parkinson's induced dementia, broke bones in his caregiver wife, retired from the nursing profession. She has brittle bone. I do not. She is 85 and I am 66. So I can understand what she was going through.

My relationship is a love/hate one with a lot of guilt that I can't be a better Christian and anger that I have to deal with this. So much emotional misery through many years that I attempted suicide once. As you can see, I did not succeed. But at some point I just don't want to do this. But there is no one who can lift this off of my shoulders and the only one with enough education and compassion to do so, also has a 60% disability from the Navy with his IBS and other injuries he sustained.

My dad has Alzheimer's for about 20 years when he passed. I am the age he was when his memory impairment became obvious. Even so, he worked to age 70. Caregiving took my mother's life in the stress or at least made her other health issues that much worse.

To say I am not looking forward to the future is an understatement. To say that death looks preferable no longer looks insane to me, even that the one who daily makes life hell for me, would pass away, is both on my mind and a source of constant guilty on my part and shame. I would not wish my life on anyone.

To cope with my own health, I've lost weight by becoming a plant-based vegan. My blood-work looks like it did in my 30s. I could still lose some more weight but stress keeps some of the weight on and my husband is paranoid that if I take a walk, someone would hurt me. There is a lot of homelessness in our area, and that part may be unlikely but it is not totally out of the question.

Sometimes getting my thoughts out of my own head helps me. To say I am tired of injuries I have endured just sleeping next to him and "wonk" over comes his arm, or a fist in my spine where I was injured, has happened at least 5 times. He had repeatedly kick me in a leg which was operated on for a period of 2 years until I left him. We later reconciled but his "convenient accidents" have been a part of him as his parents were also physically abusive to him. So I have compassion on my husband but at some point, my pity has to include me too. The psychology of trying to make me seem nuts, has also been a source of great entertainment to him. So he may be able to draw a clock face, but is he nice to live with? NO!

Yes, seniors do have ordinary forgetting, but he forgets we have automatic outdoor lights which he can turn off which he did yesterday. He tried to change the bulbs in LED outdoor lights. He almost screwed new LED screw-base bulbs into a socket which isn't there. So is that rational? But I'm sure he could talk his way into making me look like the crazy person. This part ****es me off.

With his post cancer life, I've weaned him mostly of meats, eggs and 100% off of dairy because these can trigger cancer and in the process have got both his blood pressure and blood sugar down. He was never diabetic except pre-diabetic and he did have to take blood pressure pills. And the pill he was on was recalled for making one susceptible to prostate cancer. He is now incontinent in his urine and he should lose more weight, but he is addicted to snacking. There are loads of vegan junk foods too.

That I am drinking more wine to escape is not healthy for me. I'd just like to say "Stop the world, I'd like to get off." But if I took myself out of the equation, our dear middle son, it could be the death of him as he'd grieve, he's very close to both of us. He loves his dad though he knows his dad is to say the least, not a very nice person at times and at others, extremely nice. So it it like having hot flashes. With very little temperature in between when normalcy prevails. This is my life and don't know what to do about it.
 

Lindy50

Registered User
Dec 11, 2013
5,242
0
Cotswolds
Dear @SallieMarie
Oh my goodness, what a situation you’re in! I don’t know how to help you, but I know you need help.....
I am sure that someone much more experienced than me will come along with some practical ideas, but in the meantime I just wanted to say that you must take care of yourself - for everyone’s sake but especially your own.
Stay strong, people are here for you x
Lindy xx
 

Andrew_McP

Registered User
Mar 2, 2016
391
0
60
South Northwest
File this reply under 'almost as much use as a chocolate Saturn V engine exhaust' but sometimes it's hard to just let a new poster drift past. What a lousy situation you're in! This morning I caught something on UK TV which was very much emphasising a 'nice' story relating to dementia. I wasn't particularly convinced by its newsworthiness or accurate portrayal of circumstances, but if folk are happy, they're happy; I shouldn't begrudge them that.

But it's stories like yours which are the true face of dementia to me. I thought I had it bad with a mother who was relentlessly angry and obstructive from start to... well, wherever we are now. But your circumstances make me thank my lucky stars.

All I can think to say is that no matter how loyal you are to your husband and family, your safety comes first. I know healthcare and support can be very problematic in the US (it's no picnic here, but I wouldn't want to swap locations) but you have to give yourself permission to look after yourself and prioritise that somehow. Think of it in First Aid terms... you can't help anyone if your safety is compromised.

Easier said than done though! Good luck.

[Edit: music video removed because I suddenly realised that while the musicality's great, the song's subject matter might not be ideal for someone worried about a partner doing her harm!]
 
Last edited:

Izzy

Volunteer Moderator
Aug 31, 2003
74,332
0
72
Dundee
Hello and welcome from me too.

Your situation sounds dreadful. I’m so glad you found this forum and I’m sure you’ll get lots of help and support here. I wondered, from some of your turn of phrase, if you are based outside of the UK. It’s just in case anyone wants to signpost you to anything they think might be helpful.
 

Woo2

Registered User
Apr 30, 2019
3,652
0
South East
Hi @SallieMarie . Gosh I feel for you immensely . I have no idea what to say except what a strong woman you must be.There is a lot of support and knowledge here and I’m sure others will be along soon. Please take care of yourself .
 

Rosettastone57

Registered User
Oct 27, 2016
1,852
0
I'm glad to have somewhere to post my thoughts as I am well acquainted with the disease due to my dad who is now dead, passed away from Alzheimer's Disease in 1997. He spent his last 5 years in a nursing home for AD. My dad had fallen on me as I worked on an art project for my church and to this day, I have back trouble which sometimes has me in a wheelchair.

My husband now, post prostate cancer survivor having had surgery, which was now over 2 years ago, has what appears to me to be the same thing my dad had. But he also has a narcissitic personality and has through the years done many things to me, acting out of his dissorder which appears to be hereditary as his father was also like this. It isn't that he does not have some good qualities, but he can and has been dangerous and seems to find this behavior rewarding.

He covers for himself so very well, and it is hard to tell whether his apparent memory issues are not a new means of finding a new way to be able to scare me to death or get away with injuring me.

My dad was a very soft-spoken and kind man but with Alzheimer's, a man still has a big body while his mind takes flights of fancy into dementia. This big body can hurt even when it was not done on purpose.

The difference with what my husband's behavior is telling me, is that it may be on purpose or he really has two conditions.

He is a Navy Vet and is retired so we have access to the VA for healthcare for him. Our middle son works for CalVET in an administrative capacity. This son is also partially dissabled from injuries he got when he was on board ship as a Damage Controlman. So I really have to carry this mantle of my husband's problems all alone. My son has IBS and has been hospitalized many times for it, having rescued a man who fell into the ship's bilge. He contracted hepatitis, and though that was cured, has had dreadful IBS since then. To share with him the stress I am under could put him in the hospital. His wife is wonderful, but it is not her father. And she has disablities from the Army herself and is a full-time art teacher for elementary students.

My eldest son is second in charge of a manufacturing plant making trains for the under ground commuter trains in LA. He works 60+ hours, has one son with his wife and has himself, back issues. So he can't help and the youngest lives in New Hampshire and my husband and I live clear across country from him.

My husband has recently taken to turning left in front of fast incoming traffic and with me as passenger, I'll die first. I think that may be his idea. He's done this twice in the last two weeks. Both times I end up with diarrhea from the stress and then I can't sleep and this last time the stress with my back, and I spent time in the wheelchair. We've moved lately so I've done more lifting than is advisable but that is the nature of having to move.

My husband can hide his narcissism from psychologists and psychiatrists and seem to be a very wonderful person. But to let you know that my father-in-law who died of Parkinson's induced dementia, broke bones in his caregiver wife, retired from the nursing profession. She has brittle bone. I do not. She is 85 and I am 66. So I can understand what she was going through.

My relationship is a love/hate one with a lot of guilt that I can't be a better Christian and anger that I have to deal with this. So much emotional misery through many years that I attempted suicide once. As you can see, I did not succeed. But at some point I just don't want to do this. But there is no one who can lift this off of my shoulders and the only one with enough education and compassion to do so, also has a 60% disability from the Navy with his IBS and other injuries he sustained.

My dad has Alzheimer's for about 20 years when he passed. I am the age he was when his memory impairment became obvious. Even so, he worked to age 70. Caregiving took my mother's life in the stress or at least made her other health issues that much worse.

To say I am not looking forward to the future is an understatement. To say that death looks preferable no longer looks insane to me, even that the one who daily makes life hell for me, would pass away, is both on my mind and a source of constant guilty on my part and shame. I would not wish my life on anyone.

To cope with my own health, I've lost weight by becoming a plant-based vegan. My blood-work looks like it did in my 30s. I could still lose some more weight but stress keeps some of the weight on and my husband is paranoid that if I take a walk, someone would hurt me. There is a lot of homelessness in our area, and that part may be unlikely but it is not totally out of the question.

Sometimes getting my thoughts out of my own head helps me. To say I am tired of injuries I have endured just sleeping next to him and "wonk" over comes his arm, or a fist in my spine where I was injured, has happened at least 5 times. He had repeatedly kick me in a leg which was operated on for a period of 2 years until I left him. We later reconciled but his "convenient accidents" have been a part of him as his parents were also physically abusive to him. So I have compassion on my husband but at some point, my pity has to include me too. The psychology of trying to make me seem nuts, has also been a source of great entertainment to him. So he may be able to draw a clock face, but is he nice to live with? NO!

Yes, seniors do have ordinary forgetting, but he forgets we have automatic outdoor lights which he can turn off which he did yesterday. He tried to change the bulbs in LED outdoor lights. He almost screwed new LED screw-base bulbs into a socket which isn't there. So is that rational? But I'm sure he could talk his way into making me look like the crazy person. This part ****es me off.

With his post cancer life, I've weaned him mostly of meats, eggs and 100% off of dairy because these can trigger cancer and in the process have got both his blood pressure and blood sugar down. He was never diabetic except pre-diabetic and he did have to take blood pressure pills. And the pill he was on was recalled for making one susceptible to prostate cancer. He is now incontinent in his urine and he should lose more weight, but he is addicted to snacking. There are loads of vegan junk foods too.

That I am drinking more wine to escape is not healthy for me. I'd just like to say "Stop the world, I'd like to get off." But if I took myself out of the equation, our dear middle son, it could be the death of him as he'd grieve, he's very close to both of us. He loves his dad though he knows his dad is to say the least, not a very nice person at times and at others, extremely nice. So it it like having hot flashes. With very little temperature in between when normalcy prevails. This is my life and don't know what to do about it.
I can emphasize with your situation to a certain extent. My mother-in-law had narcissistic personality disorder along with other mental health conditions most of her adult life. She was diagnosed with dementia in 2015 but as her behaviour had always been demanding, unpleasant and needy ,it took family members a long time to realise that anything else was going on other than narcissism. She was cruel and emotionally abusive to my husband and his sister over many years. My sister in law moved to the USA (we are in the UK) many years ago and has had little time for her mother. My mother-in-law had both dementia and her personality disorder going on at the same time. It made it very difficult to decipher how much was dementia and how much was her manipulation. Very difficult situation for you