I did the best that I could
I get tired of hearing about the people who were able to care for their spouses at home until the spouse passed away. I cared for my DH for as long as I could. His doctor and much of my family tell me I took care of him a few months longer than I should have.
My DH was mean and angry most of the time. He wouldn't let me help him. I had to beg to help in change his pants. He would remove his disposable brief and leave it hanging on a towel rack in the bathroom. I would figure it out when I found a puddle on the floor.
Last summer I had to come up with creative ways to create shade. All he wanted to do was sit in the sun in the 90 degree heat. There wasn't anyway I could keep him inside.
He would insist on visiting neighbors at odd hours. I ended up putting alarms on the doors.
He would swear at me and try to hit me and he called me names.
I know that it was the disease that made him behave that way.
When I was told he needed more care than I could provide at home even with help I resisted sending him to a facility. By that time he wasn't walking and using the toilet.
People just love to tell me stories about how their friend, neighbor, mother or father kept their spouse at home until the end. I used to believe that I could keep him home until the end and that I was supposed to. I now know that it isn't always possible. I just wish I didn't have to hear about all the wonderful caregivers who cared for their spouses at home.
As it is I ended up retiring early and am now spending our retirement on his long term care. I feel as though I gave and gave and there isn't much left to lose or to give and I miss having my DH home.
Comments
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I was in a very, very similar situation to yours. I always thought that I could care for him until the end. I loved him deeply and missed what we had for 38 years. But when he became incontinent and began getting angry and very aggressive and physical when I tried to help, I just couldn’t do it anymore. Sometimes, for our own sake or for theirs, placement is the better option. Like you, I also had people telling me that they were amazed I kept him home as long as I did. I admire those that can hold on until the end, I really do, but that is not a measure of the amount of love or commitment you have for your spouse. For us, it was absolutely the right thing to do and he did well in MC. No one should make you feel less of a caregiver for making that call. We are all different and our situations are all different. After I placed him, and then after he passed, that’s when I finally realized how much stress I was under. I must have been running on autopilot because I had no idea. You are doing the best you can - never doubt that!
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People who love to tell these stories are tone-deaf, especially if they tell it in such a way that makes you feel 'less than' for not being able to do the same.
The quote "If you've met one person with dementia, you've met ONE person with dementia" means that every situation is unique. How nice for those people that their loved one's dementia presented in such a way that they were able to keep them at home AND live to tell about it. How nice that they were blessed with the physical strength and good health to survive being a caregiver. Not everyone is so blessed. A high percentage of dementia caregivers die BEFORE the person with dementia.
You did your best caring for your DH as long as you could and made the difficult choice to move him to a facility at the time when you knew the facility was the best choice for your DH. He is safe and cared for, and thankfully you are still alive and able to advocate for him as his loving wife.
Before dementia entered our family, I ignorantly thought "home is best". Now I know it's a lot more complicated and nuanced than that. What's best for one person is not necessarily best for another. I've seen how much better my mom is doing in memory care than she was at home with 24/7 caregivers. She's kept engaged with lots of human contact, which, as an extrovert, she thrives on. I've told my husband if I get dementia, please don't feel guilty about moving me to MC if and when I need it.
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I actually have my mother at home and am attempting to keep her here if possible. I agree with the above - every person and situation with dementia is different. No one should have to defend their decisions regarding how best to care for their loved one - home or placement. It's not a competition. I've seen attitude from both sides (people who keep at home and people who place) because I believe people feel the need to justify their decisions. No need - and anyone who makes you feel like you need to should be told politely the right decision was made for your situation (without explaining) and, if stories are told that make you feel bad, simply tell them that's not helpful.
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There is a world of difference between a person that is cooperative, contented, confused and the person who refuses help, is agitated, angry and has bad anosognosia. It has nothing to do with a caregivers lack of ability or compassion. To imply that or even hint at it shows a complete lack of understanding and is without compassion. Don’t listen to these people.
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Yes I remember the exhaustion and never getting enough sleep. As caregivers we live with constant fire drills. I am sorry for your loss. We just celebrated 46 years of marriage.
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Ah yes I hear the stories about how happy the person with dementia was and how lovable right up to the end.
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"Tone deaf" is the perfect phrase for this. Instead of recognizing that we are grieving people suggest that it didn't have to be this way.
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While I plan on taking care of my DH until the end, I have no idea whether I really will be able to do so, and definitely would not be able to if DH became mean and angry thereby putting me in danger. You pat yourself on the back for hanging in there for as long as you could. Sending you a huge gold star. You are a hero.
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Be proud of the work you have done and the love it took to do it. It is so easy for others to say what someone should do without all the information or experience.
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I agree that there is a HUGE difference between a loved one who is complacent and cooperative vs. angry and combative. My DH has extreme mood swings - he is still in early stages and is highly functional but I have a very hard time dealing with him when the angry version of him kicks in. It's impossible to depersonalize and stay upbeat around such negative energy. I am keeping my options open for the future and recognize that I will probably need to put him in MC for my own sanity.
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This hits home. Hope for the best. Prepare for the worst. I'd rather be a wife than a caregiver/nurse/dr/manager etc etc
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To hell with those folks. They don't know crap. Notice it was always someone they knew who managed to care for their LO at home until the end or they wouldn't be talking about how amazing that was. And, they would also know it's never up to us caregivers if we're able to keep them home or must place them. It's all up to the dementia and it drives all of what we are forced to do.
My DW passed away at home only because she moved so rapidly through Stage 6 and 7 that I didn't have time to even get her placed. I had planned to place her, but she passed before I could. Her last year was awful, her last 6 months nearly sent me over the edge as she wandered around constantly, a fall risk with every move she made, constantly in a delusional state, unable to eat or swallow and on copious amounts of lorazepam and morphine. I was utterly exhausted, exasperated, emotionally empty and have been struggling to get the images of her last year and her last 11 days out of my head. I definitely don't feel like I won some caregiving prize. It just happened that way, that's all.
That's to say. Damn right you gave and are continuing to give all you have and what you did in the face of this has been incredible. No question you have been an amazing caregiver for you DH.
Big hug.
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Tboard…I don't post much because my husband doesn't fit the typical model…he has NPD (narcissistic personality disorder), anasognosia and AD…he is not compliant, and is mean and angry most of the time. He was always this way, but since dementia it is way worse. He can handle his physical ADL's pretty well, but has no short term memory, very inaccurate and spotty long term memory…doesn't know who I am much of the time even though we've been married for 56 years…extreme paranoia, confusion and delusions. He is very healthy, other than cognitively, and doesn't qualify for hospice. We can't use any outside help because of his paranoia and anasognosia and I am his sole caregiver…no children and he has no friends or close family. I know that I will not be able to keep him home until the end (he will likely outlive me by many years, anyway) and have started touring MC facilities and meeting with attorneys because he will surely resist placement with all he's got. He is on Seroquel, Zoloft and Donepezil and nothing has curbed his aggression and delusions. Anyway…I can totally relate to your situation…placing him was the only way to preserve your own sanity and health…the people who say otherwise have not lived in your shoes. I am trying to keep my husband at home as long as possible, but last night slept in my clothes in case I had to make a quick getaway because he was so verbally abusive…this is no way to live.
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You absolutely did and are doing your best @tboard They absolutely have NO idea what they are talking about.
I am sorry they are behaving so poorly with you. I am feeling "mama bear" about it.
I am probably feeling so strongly for you about this because my dad is refusing care, grabbing arms, and sometimes won't stand up (which can make it really difficult to help him) and he is in MC. He ended up having to go to a geri psych hospital to change his meds in hopes that he would be more willing to accept the care from the MC caregivers.
Some folks just don't understand what their behaviors can be like and how hard it is even for professional caregivers who aren't "on the clock" 24/7.
In fact, I am in the process of finding a new MC for him because of these difficulties with him accepting care. Add incontinence to the mix and it is almost impossible (even for a MC).
My wish is for understanding and compassionate people to find their way to you and for them to listen to you. I wish for the others to be quiet and to not comment on what they don't understand. That's as kindly as I can word it because I am having strong feelings towards them.
Sending you uplifting and encouraging vibes,
Jen
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My DH, stage 6, was always a pleasant personality guy before dementia came into our life about five years ago. He is still mostly pleasant thank God, but I now do notice some anger surfacing every so often. I am taking good care of him so far, but have been quite clear with our adult daughters that he will be placed in MC if he gets to a point that I can’t easily handle him or I feel unsafe.
Daughters are in total agreement. They don’t want to lose both their parents to this situation. And I want to be here and stay healthy to watch as my grandchildren grow up.
DH sadly doesnt really know who we are anymore, but my life in our family hasnt ended. I won’t sacrifice my wellbeing and our family’s wellbeing just because this disease found us.
And very important to me, I also want to set an example for our daughters so they dont sacrifice their lives and careers trying to take care of me, if I should also develop dementia.
Other people’s criticisms are not important to me, I know I’m doing my best so far. I’m not super human.9 -
I just placed my DW into MC almost a month ago. I too said that I would keep her at home until the end. We all probably thought that at the early stages when we found out. My DW is now 56 years old and I am 70. I’m in fairly good shape for my age and weigh about 210 lbs. My DW is 5’7 and over the past year has hit 235 lb’s. She is in pull ups, needs help showering, medications, dressing and using the bathroom. One day while in the shower, she slipped and slid off the built in seat. I have bad arthritis in my back and I couldn’t get her up. I had to call the fire dept for help. Even though I was able to do all the help she needed, I decided it was time to place her and I did. Felt guilty for a week but seeing her in MC happy and making friends, warmed my heart and the guilt has left me. Do I miss her you bet but it was the right decision. Everyone here on this site are hero’s for what they have done or are doing. On another thought I have always wondered how many people keep their LO home because of the exuberant cost of MC. I really can’t afford the cost as I will be moneyless after it is all over but you know what they say “You never see a hearse with a trailer hitch” 😂
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I can relate as I sit here with bruises. Thank you @H1235 for those words. When there’s only you, the doubt creeps in. I ask myself everyday how much is too much to endure? Is my sanity too high of a price to pay in order to keep him home? Of course it is, but how to get my heart in agreement. At this point, there is very little love left so you think that would help, but it doesn’t. All I can think of is this very hateful, angry and abusive man had a difficult life and all I wanted was to bring some happiness to him in the end. I don’t think I’ll be able to accomplish that for him. He is 5/6 stage with at DX of neurocognitive disorder with behavioral issues, lack of impulse control and delusions. I agree …Don’t listen to those people. Trust yourself. ( I say that to you hoping it sinks in for me too ). Lots of well deserved hugs to you.
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Blacksparky you have described our situation - it is so true we each have our own unique journey. DW will not qualify for Medicare for another year and we have very limited insurance now. And for a variety of reason's including who is ready financially to leave the workforce by age 46 we are in a real financial pickle. Currently starting the behaviors with stage 6 and I KNOW there is no way MC is in our future regardless of my health (good thankfully) or DW's demeanor. I wish I had the MC option at least available as I can see how that need might come about and a nursing home will be my only option. I weigh 120 pounds & DW weighs 190 at this point. It's all so hard and we all do the best we can.
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My dh was pleasant and kind and I still placed him in Stage 5. He was an extrovert—even when he wanted to read a book he'd do it at a coffeeshop, where he could be around people. I realized that if I kept him home I would be miserable, we'd be just as broke, he wouldn't be able to go out all the time, and then I'd find myself in my early 60's, unemployed, with no current experience or references. He got good care and the people there loved him.
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There were many times I wondered if I could care for him for another day. If you get to that point get help.
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I ended up retiring sooner than I wanted to and will likely end up going back to work as his care is slowly wiping out my 401K
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@tboard
I've been reading along with your journey. I recall the challenges you've managed with kindness and grace. Kudos to you for the care you have provided in-home— what you gave of yourself to make that happen is a gift not erased by escalating his care to a professional team.
Each PWD is a unique individual impacted by the disease differently in terms of behaviors and care needs. One of my dear friends was able to keep her mom home with the help of a few aides; mom was a tiny woman who presented as mostly befuddled and who passed from cancer before stage 7. Dad was not. You were wise to recognize when it was time for something different in terms of day-to-day care.
One bonus I noticed when dad moved into MCF was that his relationship with mom improved drastically. Things had devolved into her being the alcohol/food/medication/hygiene police and him assuming the role of resistant toddler. He was a burden and, however valiant her efforts, she telegraphed through sighs, eyerolls and avoidance. Once he was placed, the tenderness she once felt returned and she was able to dote on him as a loving wife again which was something he missed.
HB7 -
There are no ‘you did it best’ awards. Everyday that you get up and give all that you’ve got one more day, in whatever capacity that might be for you, is a good one. Don’t accept anyone that tells you or implies anything different. I am in awe of the strength and resilience that all of you with a LO with dementia manage to muster every single day. This is not easy. No matter how you do it. Period.
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Yes, there are some folks who use that lip-smacking tone and say "I'm keeping him home until the end " like placement is akin to leaving a 6 year old at a traveling carnival.
Who knows what their finances are like , or if they are just trying to find a goal, some goal to make it seem like there is a order , a plan to the slow dragging chaos of dementia.
You do what you can, and keeping yourself healthy is on the list, your PWD is dependent now and needs you to give them love & care - in whatever manner works for your situation at that time.
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With my MIL with dementia, she went from her normal angry, critical mood, to becoming a really sweet, quiet old lady.
The point is, dementia seems to affect people differently.
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I initially thought I could save money by keeping my DH at home. Things became impossible - wandering, agitation, incontinence, increasing health issues, etc. My children and my DH's doctors told me I couldn't safely care for him any longer. They were right - if I didn't place him I was going to go down with the ship. So here I am on a Friday night watching TV and sipping a glass of wine all alone while he is in a nursing home. I was recently bedridden with a virus and happy I didn't have to take care of him too.
I wish he were healthy again and we could ride off into the sunset together, but that ain't gonna happen. The tradeoff? Spending all of our retirement money on his care.
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This is not a competition, this is not a job that you choose and this is not a job that anyone has the right to judge you on. We are all coping as best we can. Every situation is uniquely different but the same, extraordinarily difficult and sad. My sweet mother-in-law had wandering dementia, we could not keep her at home, my mother’s head was fine but her body was breaking down and we were both working with two school aged children, we could not keep her at home. My beautiful DH happens to have a very sweet generous nature, he has always been the same and I pray he will stay that way. So far, as sad as the situation is, I can cope with him, along with a lot of outside help, at home. But should the day come and he turns nasty, enraged or too difficult to handle then I will not hesitate to find a place for him. And I dare anyone to criticise my decision. To stand in someone else’s shoes is impossible, to stand on the sidelines and throw criticism and righteous words is easy. Do not listen, believe in yourself.
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My situation is very similar. I have spent all of out savings on his care and just started spending from my 401K. I miss him so much and I have never lived alone before. I always thought we would enjoy retirement together. I am enjoying some "me" time and it is nice to be able to leave the house whenever I want to.
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How awful!
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Thanks for the kind words. My DH can be cared for because of all the drugs they put him on. He wouldn't be safe at home but they can take care of him. He still acts out sometimes. He recently threw a glass of water at an aid and he is fond of "firing" people.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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