Here I am again posting the same rant. I still have the same emotions maybe bordering on burnout. How do you as caregivers who have no husbands or other friend or relative to converse with only your mother who has dementia? This life is very lonely and isolating. And it is very hard to find a good inexpensive, reliable person to fill in for those times we need to escape if only a few hours. I find myself sleeping more and drained of energy to engage in any kind of social life outside the home. After fulfilling my duties for my mother, I feel too drained to do much else. I know most will say find placement for her in a good facility but knowing my mother, she wouldn't be happy away from her familiar surroundings and would not last long. Question: if the POA signs a contract with the facility, but the mother misbehaves terribly, can the home release her for such conduct? I'm using the services of Catholic Charities at present but the woman spends her time sleeping and will not wake my mother to eat, etc. All of the at home agencies charge 20 dollars an hour to just supervise. This is a sad scenario when the elderly have and choose to lean on a daughter or son for her his care. Suggestions to not lose my mind? Thank you kind warriors.
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You also cannot assume she wouldn't be happy away from familiar surroundings. Generally people suggest moving all her BR furniture and other items to the room she will live in. Sometimes people adjust well to the move, given time. Others may not.
Our mother doesn't have nearly the issues your mother has! We moved her to MC because YB needs to work and has no room, OB isn't local and just wouldn't be a good choice in ANY case and I physically couldn't care for her (she also refused to consider moving ANYWHERE, even though AL had always been 'in the plan' she had.) She just finished year #3. I have seen others come and go, some passed on, others needed more care and moved. She is now 96. When we moved her in, she was still mobile and certainly not "happy" about the move. She would beg YB to take her back to her condo (for 9 months, then it changed to their previous address, from 25 years prior!) Meanwhile, she was doing fine. Staff would report this and observations could confirm it.
She has since moved to walking with a rollator, and now refusing to stand/walk without help. Otherwise, she is still self-caring with anything that doesn't require standing/walking. She has, in the past, commented on how nice the place is and how nice it is that she doesn't have to do anything (aka laundry, cleaning, meal prep, etc.) Is she 100% happy? Probably not, but who is? Would she do better at home? Probably not.
As others suggested, see if you can find a place that does respite care. Generally a week or 2 won't be enough for her to "adjust", but it will give you a break and allow you to consider if this might be a good place for her. You can broker it with some excuse and say it is only temporary. But, do it again and make the stay longer. She how she adjusts. Ask staff for reports. Go without letting her see you and observe. So many LOs complain and whine about lack of care, the food stinks, etc, but in reality they only do this when being visited! On the balance, they are content and often are enjoying themselves.
If you try this, don't visit during the stay. If you end up moving her, curtail visits initially, to allow her some adjustment time. When resuming visits, don't go every day and don't go the same time of day, so you can see for yourself how things are going.
Too many feel they *must* do the care themselves, but sometimes it does take a village to see to all the needs and prevent burn-out. Surely hiring care to come in (I would politely ask that woman who is there for free to not come back) is an option, but sometimes it is hard to find and/or retain good help, juggling to ensure the needs are met, rearranging your schedule when someone cancels, etc would seem like you are doing just as much or more work!
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If you or your mother have any money, this might be the time to spend it. If you are "saving it for a rainy day," notice that "it is raining." If you have no resources, investigate Medicaid.
Use this forum to communicate with some non-Dementia people. When my husband was sick, he did not want anyone to know and did not want me to tell any friends or relatives. Communicating with anyone, even by forum or email, let me rant and worry and despair and laugh and totally saw me through.
Take a deep breath. Look into hiring more help or facility placement. You are worth the expense.
There are all kinds of online training or education options. You will need to get a job and soon when your mom dies.
I was lucky. Mom required 24/7 care and I do have friends who helped sit with mom so I could work a few hours weekly, and I got scholarships (sometimes two of them) so my Bachelor's degree did not cost me a dime. If you make straight As you can get scholarships very easily. Colleges hand them out like candy. Scholarships provided free tuition and even paid for my books! It was horrendously stressful keeping up my grades, but I wanted free college. Education helps divert your attention away from your mom and you will be so stressed out with exams and papers but it also keeps you on the pulse of the living. It also prepared me for mom's death and I merged into the working world and can take care of myself. My age? 59 years old. I will be 60 in six months. Just now I have discovered I have a life outside of my mom, but it is a horrible adjustment. But I prepared for mom's death and it sure happened...just two months ago. She was 90. but died at home, with love surrounding her, and she never needed a single narcotic or psychotropic all the years I cared for her. Even the hospice nurse was surprised how peaceful she was and never opened the comfort pack. When mom died she opened her eyes and took deep breaths and just died. Alzheimer's did not kill her; ironically the PEG feeding tube kept her body amazingly healthy -- her mind totally gone--but she had liver cancer and died from that. From onset of symptoms to death was only one week. I could tell her body was shutting down because she normally had ZERO tube feed/water residuals. One morning her urine turned a deep orange due to billirubin and had 60 ml residuals and I knew she was dying. I called my brother and he flew down from across the nation to be with her. Sure enough she died just days later. Peacefully.
Reach out. Prepare for your mom's death. Because it will happen. Get all the estate matters done now including pre-planned cremation (or funeral). She will die and will leave you stranded.
Mom's death left me feeling like I died inside too. I lost 15 pounds. I no longer cry daily, but I feel very alone. Still there is an acceptance of what happened and I carry on because mom would not want me to go on the roof and crack up. I also cannot reproach myself because I did all that was humanly possible for mom, and she knew that too. Mom knew how much I love her and I never minded doing her tube feeds, daily Hoyer lifts from the bedroom to easy chair in living room, then back to bed hours later. Changing her diapers at least 4 to 5 times a day. Sometimes 6 times. Her skin was in perfect condition. And I also had to induce bowel movements three times a week which meant prune juice and cool coffee down her feeding tube in the morning. I also put LACTULOSE down her PEG tube the night before. She would go in the morning. If that did not work I would give her a glycerine suppository. THAT would make her go.
After her feeding tube she lasted a long long time and never tried to pull it out. Not once. Before that I spent 1-1/2 hours feeding her per meal including getting fluids in her. I used the feeding tube as a last resort so she never bothered it and never had a single complication from it. I took care of that PEG tube very nicely.
Not once have I ever resented doing this. Mom was my life. But after her death I accepted this, and she lived a good long life. I'm supporting myself and that helps me a lot as I interact with other people and function as a team.
She has TEN DISABLING AGE RELATED CONDITIONS.
She is NEITHER HAPPY NOR SAD living with the type and degree of disabling situations for which she requires care, because her sensory feedback system and cognitive systems are declining.
She will “not last long” whether she is in your home under your care or in a good residential setting that will appropriately meet her needs, or in a resort city or Alaska or ANY OTHER SETTING, BECAUSE SHE IS NINETY-FOUR.
You are in your sixties. If YOU DIE of stress related ailments, will she be “happy” to continue living as she is?
”........knowing my mother...? Are you speaking of the mother who raised you and loved you as a child, or the mother for whom you are caring now? Does this mother tell you “Do everything I need to have done for me with minimal help for yourself, because you OWE me care that is making you sick and depressed because I gave birth to you”.?
MY MOTHER was my hero and my confidant and my best friend. When she became incapacitated, at 90, I spent the worst 9 months of my life taking care of her with very little release time, sleeping on the floor next to her bed because she DEFIED numerous attempts to ensure her safety, performing EVERY CARE TASK.
What saved me? HER final attempt at moving unsafely in my home, in spite of ALL POSSIBLE SAFETY INTERVENTION, opened my eyes to the fact that she had placed herself AND ME at risk for serious injury.
Out of love for HER, AND FOR MYSELF, I found an excellent SNF where she lived for over five HAPPY YEARS.
Finally, EssieMarie, your mother didn’t “choose to lean on” you to the extent of making you despondent and exhausted and lonely and drained. She became ill and needed you to do the best you could do to ensure that she was safe and well cared for. That did NOT mean that you and you alone should be responsible for her life 24/7/365 for as long as she lived. YOU chose that.
You are a human being. You deserve good care, and having good care is your right. You are responsible for yourself. You have paid your dues to your mother MANY TIMES OVER. It is time for you to do the research, evaluate your circumstances, and evaluate your mothers, WITHOUT GUILT.
Take ONE STEP.
What would happen to her if you were unable to take care of her?
This is an awful time for you and I'm very sorry. I've been through some bad times in my life, but nothing compared to what the last year taking care of my mother has been like. I took care of her on a lighter level for the last 12 years, but this last one, with her developing vascular dementia, with depression and sundowning, left me feeling like someone put me through a meat grinder. It is now over for her and she is at peace and I already miss her terribly. Not the bad times though! I used to get angry when I would hear someone tell me to take care of myself! How the the H*ll was I supposed to do that when every second I felt like I was putting out a fire somewhere taking care of her??!! But you do have to find some way to give yourself some down time. I would highly suggest finding a facility to move her into. She will be taken care of. Not in the way you have probably taken care of her, but if something happens to you, what will happen to her? You have to consider that possibility.
I am going to be straight with you. I don’t believe you are bordering on burning out. I feel that you are right smack in the middle of burning out. It doesn’t matter if you are alone, have a spouse, have or don’t have siblings. All of us are capable of burning out.
I am not trying to be harsh. Why do I say this to you? Because I recognize myself in your words. I have decades behind me as a caregiver and 15 of those in my home. I hit my threshold of pain and finally let go of the responsibility of being mom’s primary caregiver.
It doesn’t get easier. Stop trying to adapt or cope. You’re trying to fit the square peg into the round hole. It does not fit and never will.
Do people care for their loved ones at home? Yes. Does it work? Sometimes it does. I respect those who are able to make it work and happy for them. It’s still challenging and hard. I acknowledge that. Do I think any less of those who aren’t able to make it work? No, not at all. We all have different circumstances.
Are you a person it is working for? No. So do you think it’s time to quit trying? I surely hope so.
Read my question again. I asked, “Do YOU think it’s time to stop?” I did NOT ask your mom. I am not interested in how your mom feels because that is precisely what kept me from ending my agony. Your mom will adjust.
I was so concerned about my mother’s feelings that I severely neglected myself. Do you see the mirror image of me in yourself? I do.
My mom is now living with my brother and SIL. She criticized me so much. She stirred up so much crap to my brother and then he criticized me. Funny, her doctors praised me for such good care.
I had enough and told her to leave. Do I know what her future will be? No. It is no longer my concern. Do I care about her as a human being? Of course, I do. I care about all human beings. That doesn’t mean that I have to be personally responsible.
Sadly, my relationship with my family has been severed. I am sorry about that but what did I lose? I lost the weight of the world on my shoulders. What did I gain? My life back. Peace and joy. My sanity. Socializing with others. And much more.
I was willing to make changes that I needed to make no matter how I felt mom would take it. I was ready to take my power back.
Yeah, those were the exact words from my therapist! I happened to find a great therapist who became a Godsend to me. He flat out told me in a session once, “Take your power back and don’t ever give it away again.”
For the first time, I really heard his message loud and clear. I heard many people on this forum tell me to let go of my responsibility as well and I am grateful. It may have taken me awhile to process it but when push came to shove I was ready and remembered my therapist’s words.
So, I am passing along that message to you. Take your power back and never give it away again! Will you choose to hear it? Are you ready?
I purposely did not address the situation of at home caregivers because I don’t feel that is the right fit for you. One person can’t always do it all, even with hired help. Please look into a facility for your mom.
move away or get a different job. So, finding good caregivers is an ongoing job. If you find a good one, make sure you pay them well. I know money is tight. Believe me, I get it. But, you need to turn your mom over to someone you trust so you can get out of the house and relax. You are doing this for yourself and for your mom. Time out is time when you are recharging your batteries. Don’t make it just about grocery shopping and filling up the car. This time (or a portion of it) is filling you up so that you can take up your caregiving duties refreshed. Finally, be really nice to yourself. You are doing something wonderful for your mom. I hope this new year brings you joy.
This may have been asked before. Have you tried Medicaid homecare. Or Office of aging?
Really, Mom has Dementia. Her quality of life is non-existant. She can no longer enjoy things. She can't be taught anything. Yes its familiar but your dying inside. Its time for LTC.
My mother fought leaving her home for years, finally she had a small stroke and panic attacks set in. My brother and I sprung and moved her close to us in AL.
We thought she would hate it, she loves it. You are assuming and awfulizing, most settle in nicely, IF allowed to.