Is there such a thing as being emotionally incompetent to be a caregiver?
Mom is 70 and has Lewy Body Dementia. Her dementia is mostly visible in that she is no longer ambulatory (wheelchair bound). Her mind is "mostly" intact. I am only 49 and have been her caregiver for 3 years. My family on mom's side (including her and myself) has a history of mental and emotional illness (anxiety, depression, hallucinations). Unfortunately, I have been changed to a few different anti-depressants over the last 3 years that have not helped the situation. I'm finally starting to mellow out but mom keeps telling me that I'm mean to her and then 30 seconds later be mad at me saying she didn't say that or I'm taking it out of context.
The stress level and increase in blood pressure has caused my doctor to now also prescribe me anxiety meds to take as needed. I'm young and only been doing this for 3 years but besides my husband, I have no family to help. I haven't had a vacation in years and my mom has a buzzer for when she needs something that has been rung during attempted periods of intimacy with my husband. I feel like I'm already at the breaking point. :( How do people do this for years? Is it possible that I'm emotionally defunct to the point of not being able to be a caregiver or is that just a cop-out?
I pray for patience and humility. I don't know what else to do. Respite care is out of reach at $275-$350 a day (or $150/day if she stays for 2 week minimum). Thoughts? Thanks in advance.
It is no shame or tragedy to admit you aren’t cut out to do it. If you are a religious person, know that God and St. Peter will not judge you harshly because you put Mom in a facility.
You need to get well and stay well. You’re way too young to spend the rest of your life like this.
Mom needs to be somewhere permanently. She can go away for days or weeks at great financial hardship to you, but as soon as she comes home, you’re right back in it again.
Tomorrow, call your local Medicaid office and ask to apply. You might even be able to apply online. Or, if you feel she’d be approved, find a facility and she can be “Medicaid pending”. Then start a spend down if you need to. Or, consult with an Elder Law Attorney which will be easier.
This is a situation that will not get better. Dementia only gets worse. You have no chance to get you’re feet on the ground, or apparently anything else, as long as you’re waiting for that buzzer to ring.
It sounds like you have ample amounts of patience and humanity.
I might explore other care options. If funds are an issue, consult with a professional about what she may qualify for and how. Once your own health is affected, it's difficult to get it restored. I learned that the hard way.
I do think that some people are very sensitive and perhaps too hyper- vigilant regarding a LO's demands. And that you can be run ragged trying to please someone who is not able to understand their condition. Sometimes, you can't please people. And, when that frustration affects your own peace of mind, it may be that other help is needed.
Start your research, do some tours and commit to the one that’s the best fit.
It’s a blessing that your mother has adequate money. As for Mom’s attitude and vile words, she talks to you like you’re dirt no matter where she is. So make the choice that gives you your life back.
If you keep the status quo, you won’t just be mentally and physically wrecked. You’ll be divorced, too.
When you talk to her about it, make it clear that you love her and aren't abandoning her, and that you will still visit, but that you can't do it all by yourself any longer, and want to look at places with her to find her a nice one that she likes.
Please no guilt-my Dad is 91, you could have 20+ years of this. And it will never get better.
Best of luck to you. We finally got our Dad placed-by forcing him in legal ways. Now we can breathe again!
You deserve that for you and your spouse.
Try a carer that is not with an agency. For heaven sake take the buzzer away. Maybe not all day, but at certain times.... O_o
Believe it or not lots of people live without a buzzer and they are just fine. People in nursing homes have buzzers and they forget they are there. They manage just fine. You just turned yourself into a personal attendant. If she is in a wheelchair she isn't going anywhere.
Perhaps you can get a carer as a sitter and take a few hours with your husband. Try college kids who are looking at health care careers. You can be a good reference. They will have the patience to stay with her a few hours while you go out. It will give her an outlet too. She might look foward to seeing them, and you get a break.
You were joined by an umbilical cord once. You cant stick it back in. Its long gone and your an adult now Lol. You need your own time and stick to your guns!
Set mom up in her room or in tv room and have alone time with your husband. Could be for a snuggle and watching tv.
Put mom to bed early with her tv and plan an at home date nite. A good meal and a movie. How about a 2$ redbox movie? Play a game like dominos. You don't have to spend $ to have fun.
Try listening to books on tape while you wash clothes, clean the house. How about a great Frank Sinatra song- "if I can make it there, I'll make it anywhere" and sing at the top of your lungs whilst dusting?
Take a 15 min walk to distress. Play a computer solitude game.
You have to start making time for you. Only you can do that. You don't need permission.
If mom has a fit guess what? Too bad. You can always say I need time off. I wouldn't elaborate about date night or it will become about her one way or another.
You can always say thurs we will watch/do something you want. Friday is my family time.
It's really about setting limits and boundaries. Try small boundaries first, then work up to bigger ones if you have trouble. Good luck~
(And I'm one of the ones who could never have my mother move in. I can't stand being around her for just about any length of time (I'm her Dummy Daughter Driver). I could never put in three years!)
People who do this for years learn ways to cope. Taking time for yourself is essential to your well being. I hope others will give you better advice. You are beginning to show the signs of burn out. Not good. Take care of yourself. People do care. 💙
I might also question how you would feel if you toured a facility to place your mother and they said that there would be one caretaker assigned to her and that she would work 24/7 for three years taking care of all your mother's needs. I don't think family members consider that when they believe they can do that alone for extended periods of time. I might question if you really believe it is feasible.
When you TELL mom she is moving to a facility, have 2 bags packed right in front of her, one for her and one for you, when she asks about them you say "One is for you because you ARE moving and the other is for me because I am being sent on a guilt trip." 😉
She knows how to manipulate you dear woman, please end her reign on your life, she had her shot, now it's your turn. No guilt, you will still love and care about her as her daughter not her caregiver. Let the professionals provide her care and you provide the love and treats.
Learn to just ignore the guilt, you did not do anything to her, so you have no reason to feel guilt. If she says you are doing xyz by putting me in a facility, no mom, your body is doing it and it's just life, no one's fault. She really does need a village at this stage of things.
You got this!
So insightful! Thank you
You are stressed and anxious not because there is anything the matter with you, but because you are living in an environment that is full of causes of stress and anxiety. Until the causes are addressed, those treatments for your mental health are utterly pointless.
I am not unsympathetic to your poor mother. At 70, she is young; and we have learned from brilliant narrative posters such as Jeanne Gibbs how cruel and overwhelming LBD can be. I do recommend you search for some of Jeanne's answers here on the forum. She cared for her husband, not her mother, but you will still find lots of wise, practical advice there.
Stop thinking that there is anything wrong with you. You're not emotionally incompetent; you're not defunct; you're not any word that means you lack some key quality that a reasonable human being ought to have. [Aside: you are expecting your mother to be normally rational. Stop expecting that. You'll find her outbursts and accusations less painful to deal with.]
Have you thought what work goes in to providing the care and support a person with your mother's condition needs? In a professional setting, you'd be looking at a team of three-ish trained, qualified and experienced people, plus the facilities and equipment, plus the visiting specialists and ancillary staff who all contribute to creating a good quality of life for their charges. You can add the work up in terms of time, training years, money or whatever; but what it will never add up to is a realistic job for one person and her husband in the family home.
So. You need a different plan. Start by contacting your Area Agency on Aging and asking for advice on resources and support.
You are always so thoughtful and articulate, not to mention wise.
Thank you for sharing yourself.
You love the person. that's why you are a caregiver. worry, anxiety and depression are constant companions of mine.
The stress affected my eating habits and my BP - Hibiscus Tea lowered my BP and I was able to stop the Lisinopril.
Instead of praying for humility - pray for your sanity. Every night I prayed for guidance, patience and my sanity. When something new cropped up, I asked for guidance and the next day I would find a possible solution online!
I don't know what to advise about your intimacy - I was caring for my DH so that wasn't an issue. Perhaps you can find a "sitter" so you and your DH can get away for a night of re-acquaintance? Through your church, there might be a list of people willing to sit for a few hours and even do it for free. There are also free day-care centers for the elderly and they even come pick them up and return them home again. Check with your county aging office.
But I only have my little dog in here with me and I’m 30 years older than you. I’ve got the time and the patience (most of the time) that comes with age-you don’t have that luxury (sic!)
Just be aware that you’re not abandoning your mom. You’re not giving up caring for her, there will be plenty for you to do still and the distance will do you good, so there is no reason to feel guilty.
Shell probably give you the busines so prepare for it by knowing you were right to do this.
Ill tell you, one of my biggest concerns is that I’ve kept my mom alive just for selfish reasons. Her quality of life is very poor. Just getting up everyday to watch t.v. Her mind is mostly sharp but she can’t DO anything! She’s so stiff she can barely raise her arms, she’s so weak she can’t carry or lift anything, I can’t find anything she enjoys anymore or that she’ll get interested in to keep her occupied.
Good luck to you
Charlotte
If Mom has money place her in a suitable facility till it is almost gone then apply for Medicaid. It will be a hassle of course everything always is but think of the rewards.
If you don't already have POA health and financial get it now before any of this is discussed. This is not going to happen overnight so make some temporary arrangements now to give you and hubby some private time. If you don't already know that is one of the most important things in a man's life.
Maybe friends on vacation would led you their home for a night each week in exchange for cutting the grass or shoveling snow.
As suggested find a nice strong healthcare student for the night and put them in charge of the buzzer, In this case it doesn't matter if they sleep on the floor outside Mom's room the buzzer will soon get them awake.
Lots of ways you can make this happen without too much financial stress.
Just for brief moments, my Mom would get mad and try to hit me, though with her limited strength, never worried about getting hurt! Yes, I knew this was not the kind, compassionate woman who had raised me and was now mostly just agitated with the way life had turned out. However, it was my Mom and the changes in her, though brief, were hard to accept!! I hurt for you and pray you find a solution that relieves some of the anxiety and the depression in your life!
I will also utilize the grocery app instacart if I need things later, they deliver. Walmart will shop for you and you go to pick it up. Hang in there!
I know, I had many helpful neighbors tell me I needed to do this when I was ill and just out of the hospital. My fixed bills plus Rx leave me $15-35 a month. So I qualify for SNAP/LINK/Food Assistance. These people all had more available income than me. They were clueless.
About 20 people told me about a service advertised, full page, I the paper, that would come clean up your yard after your pets. None bothered to call first and find out the fee was $40 for each visit. Better than the $50 charge from building management, but more than my rent, if they came daily. Great service if you own your property, and need it done weekly or monthly.
They knew of my need because the day the snow finally melted I was given 3 hours to clean up. Most of what neighbors reported was from other animals, not my Service Dog! I was getting Home Health Care after the hospital. They didn't provide housekeeping or care for my Service Dog. I went out with my walker, ended up collapsed on the patio. When I came to I had to call EMS to carry me in, because I couldn't get up. Word got around the building, and all of this helpful advice.
No one offered any actual help!
So know the details before you offer quick fixes! Now 2 months later I was able to use that service for TP and OTC meds. I called ahead, and then from the lot and they delivered it to me in the car.
Knowing your strengths and your limitations can allow you to make better decisions about how to move forward to ensure your loved one gets the best care possible. And it may not be from you. That's okay. The goal is the care, not that you provide it yourself. I wouldn't call this emotional incompetence, I'd call it assessing yourself objectively and responding to the changing needs of your mom, your husband and yourself. When you've freely given all that you have to give, and you find yourself depleted, is it realistic to believe you'll be able to provide what you know in your heart your mom needs? Isn't it just as loving to arrange for care elsewhere and act as a persistent advocate for your mom's wellbeing?
There is a ton of advice available in this forum from people far more experienced than I. I know they'll give you details and practical tips to help you resolve your situation. For me, well, I just hope you can see that your self-awareness is a gift to your self and your family. And I hope you can see it as a strength.
My Grandfather, a very educated and intelligent man, was the loving caregiver for my Grandma after she broke her hip. He educated himself constantly.
People don't see, what they won't see. Buying an exercise bike, which was at the landing upstairs, when she almost needed to be carried to get upstairs, was not smart or kind. It was used about 5 times, because he had to hold her up and help her move her legs.
I visited and found her laying in bed for a needed nap, but he swung her legs down and had them placed in stationary pedal stand with straps he designed. For 20 minutes he made her exercise, as she tried to sleep.
Now, he kept her circulation going, and her skin was in amazing condition...great genes, but then they both started getting sick. A family member visited, and found that the fridge was filled with mold, they had been eating moldy food because Grandpa could not see it, his eyes were so bad. They cleaned out the fridge, had it serviced, and made arrangements to move them against his will.
Eight years before, Officials had tried to interceed when the nearby Mississippi was more than 20 feet above flood stage, and they called in the National Guard & used prisoners for the daily build up of the levies.
It was when the house would have been under 8 feet of water that officials removed Mom to a hospital on higher ground and made Grandpa stay there at night. But during the day he still went back home.
At the time 5 relatives worked or volunteered at a Nursing Home. Grandpa died the first night. Grandma lived serversl more years, making new friends and visited by family every single day. There were 8 family members in the room at 2am when she passed.
My mom has a memory "as long as a gnat's eyelash" but she still talks in sentences & on occasion even professionals can't tell for up to 5 minutes when they have been forewarned that she has dementia -
Your mom needs to be professionally tested & don't ask her if it is okay just take her - when I take mom to these app'ts I say lets go out for ice cream & she gets it after the app't - most of these professionals are so nice to her that she purring over the attention that she doesn't mind
From my experience your mom may be farther comprimised than you realize but just as you never see your kids grow so when you live with someone you don't see the decline because you adjust day by day to the changes whereas others might see the change
From what you say start looking for plan 'B' for when you need it because it will be 'when' not 'if' - by doing your research now you won't go into panic mode when/if a crisis comes up rather you will have all your ducks in a line - I wrote out scenerios for both of my parents so when the time came I just slightly adapted a plan that I had done before the crisis loomed up
Thank you for this. I do find I don't allow myself to get so stressed out if I attribute certain attitudes and actions to the dementia. I'm more frustrated when I think to myself "she should know better" or "she would never let me act that way." Thank you
Regarding income & assetts, there are usually these issues, too much, too little, a little too much, and too miserly.
The middle two require turning over rocks. The first and last require research to find approriate care at different price points, and change your care status to monitoring that she is getting care.
Last, Mental Health issues, are Health issues. You would not hire someone with Schizophrenia, Delusional Disorders, or a Sociopath to care for your Mom. Nor someone whose depression or anxiety is interfering with their activities of daily living. If these describe you, you need to be replaced. I say this with compassion. It is more than just the stress of dealing with her illnesses!
Often those with mental health stuggled have had less earnings, so it is decided they should be caregiver. This is rarely a good idea!