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My father has dementia, and due to unavoidable circumstances that I won't get into here, my mother has had to care for him with almost no help for the past two years. She did an outstanding job of this but it has taken (and continues to take) an enormous toll on her health. I am now living in the same city and I help as much as I'm able - this alleviates some of the workload for her, but I also have to earn a living so there's a limit to what I can do.


My mother knows that she needs a break (whatever that may entail: someone to come in and help with my father, or having him stay in a respite place for a few days at a time) but sadly, her own mental functioning has declined to the point where she seems unable to go through the steps that are necessary to get this care organized. I have told her *many times* that I can help her with it, but she absolutely refuses any help (she is an extremely independent, private, sometimes stubborn person). At this point I think we're past the point of stubbornness though - she's just not thinking straight. I talk to her about this frequently, but it doesn't do any good because she forgets the conversations.


I've thought of alerting my mother's doctor about this situation, but I'm not sure whether he would even discuss the issue with me. Other than this, I really don't know what to do.


In the meantime, my father's situation is getting worse, as one would expect.


Any advice would be greatly appreciated.

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There is help possible through your state's Area Agency on Aging. You can refer your parents for an assessment. They will be evaluated for "critical needs" and have a case manager assigned to them to oversee services. They can get help with ADL's, grocery shopping, meal prep , laundry and even light house keeping. There is a sliding scale fee for these services. However, since you say mom is also getting dementia, may need more help than state home care can provide. Still maybe mom just getting tired. Needs a mental status exam from doctor. Sometimes stress can cause serious mental issues.
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My 87 yr. old father is my mother's primary caregiver. What you describe about your mother is exactly what is happening to Dad. It's heartbreaking to see their care and dedication of their loved one take such a toll on their health.

We found a solution with hospice, extended care!
Medicare pays for hospice care.
1. A nurse comes once a week to check on Mom (and Dad). This gives Dad assurance that he has support for medical care; diabetes is being managed, UTI's are being avoided or caught early, various pains that Mom can't necessarily decribe can be checked, sleep disturbances, mobility issues, skin issues, and a host of other things.
2. Regular visits from a social worker provides Dad with info on other resourses and emotional support.
3. An aide comes 3 times a week to assist with bathing and light housekeeping.
4. A volunteer from hospice comes every Sunday morning so Dad can attend worship services.
5. A volunteer can be provided for various purposes if Dad needs.

They did not change her meds, she still has her GP but the hospice doctor is first contact.
She can have hopice care and remain at home through end of life.
Hospice also provides some things like her walker, Depends,
a hospital bed if needed etc.

One of the immediate benefits is just having someone there several times a week who dad can talk to; share concerns that he's reluctant to talk to me about.

Hospice has been a blessing for us!
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You must speak with your mother's doctor and make sure that your name and contact information is on the doctor's list of authorized contact people.
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Sad as it may be and upsetting, but before YOU go down the tubes from their behavior and need for care, you have to start figuring out where to place them. It is not only now a safety factor but they both need help and you can't do this yourself...it will destroy you. If you can enlist the help of the doctor fine but if not, then you will have to get the ball rolling. Contact the professionals in your area who can advise you and help you with information and the transition process. You have no choice. You have to act now before something happens.
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Please take her to see her physician. While you and she are out to see the physician, have a caregiver watch your father for a few hours. Just to let you know, the stubbornness is very common.
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There are some outstanding ideas on this thread. I might also consider staying in the home so you can actually see what your mother is no longer able to do for your dad. She may not be letting you know all that is lacking. I'd take notes, so you have a concrete list. If father's care is truly suffering, due to her inability, I'd likely go to dad's doctor with the info, asking that the doctor make a recommendation for alternate care, either in home or placement and if mom resists, APS gets involved. It may be that mother's feelings might have to be hurt to get dad the care he needs. If she's not taking care of dad, though, she tries, it may be that she's no longer capable. And you can't explain or convince someone of something if they aren't capable of accepting it.

I might also see an Elder Law attorney to get the options, just in case you need to move forward legally.
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There are 2 possibilities here:
1 - she is so exhausted that she can't think straight & is mainly going on autopilot
2 - she has the start of dementia herself & again is mainly going on autopilot

It can be hard to distinguish the difference between the 2 - it may be time for some intervention - if possible get any other siblings on board - arrange for a few days off for mom by having dad go for respite - she may not want to go far but 'just catch up on things' but an afternoon at a spa with a massage could help enormously both mentally & physically

You'll have to sell her on this - or maybe arrange for adult day care once a week - you'll have to let her know that you feel she is doing a great job but that you are worried about her not your dad - it might be good to get some info & then ask her to pick from a few choices but she must pick 1 not just flat out say 'no!'
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Are you your parents POA/Medical directive? Are you their guardian? If neither of these things are in place there may not be much you can do. Without any of those things in place, your in a very difficult situation. Talk with your Mom about those things, get them taken care of, then from there look into placing your parents in a facility that can help them. They need your help....their just too proud to ask for it. ;-)
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I really have nothing to add as far as advice, but your situation seems so similar to one in my own family that I am moved to comment. My MIL took care of her husband until his death. Many people asked her if she needed help and suggested it but she insisted she was doing fine. Many times when suggestions were made she acted like they were good ideas but never followed through. We dismissed many of her problems with memory and decision-making as being due to the stress of caregiving, lack of sleep, not eating properly, etc. Sadly, after her husband's death it became obvious her problems were more serious. She was diagnosed with Alzheimer's and continued to decline. Whatever the case is with your mom, it is obvious she needs help and I hope you can find the help you need in addressing these issues.
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Are you power of attorney and healthcare proxy for you parents? My mother was resistant to many of the changes that were necessary. Fortunately, mom did a couple things because they were what dad wanted. Dad wanted my name included on their bank accounts. I would make sure that you do this. Last, go to your parents doctor's appointments whenever possible. Establish a rapport with the doctor; it helps. Last, set up help through an agency. This can be done privately if your parents can afford it, or through local councils on aging and/or medicaid. Be there to help facilitate these forms of help. This can include passive assistance like Lifeline, and locked automated drug dispensers. Semi-passive like meals on wheels and housecleaning/shopping services, and more involved, like visiting home aids, and adult day care. If you can, start small and help mom see successful accomplishments and give her time to adjust to each thing and work your way up to bigger interventions. The good news is that if and when dad needs to be elsewhere, mom will have be more open to change if they have to move, or will have a terrific support system in place for her to live at home independently by herself.
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The local Agency on Aging has a program for respite to help
psy for it and also may supply disposable goods like diapers or underpass. It is free and does not have any requirements of assets or income. Solely based on need. It is to help caregivers out because they are a huge asset by taking care of those who would be in nursing homes otherwise.
Also, an evaluation by. Geriatrician May be of help. Mom may allow it if you try saying it is for dad and then see if both may be evaluated.
I was at odds with my mom when she was taking care of my dad. I offered my help; to drive, pay bills (help set them up online for convenience), find a geriatrician to evaluate dad, cook a meal...
she would say no, but then she started to say yes and was relieved by my help. It is about saving face and being of the proud greatest generation.
they need help and may not have the rationalities or logic to accept it. Some things, I would just do, like the dishes or straighten up.
Hang in there.
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"Getting worse" does not paint a good picture of the situation. We do not know their ages or level of disability. It is entirely possible both of your parents will need long-term care. Even hospice will not offer too much help other than a home aid coming over a few times a week for an hour or less, and they can help with supplies but the majority of the care will come from family. You can put them in assisted living (if still able to manage own bowels/bladder) or nursing home (unable to manage self hygiene). It does sound like you need establish Power of Attorney (POA) and estate planning; make an appointment with an eldercare attorney.
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It depends on your mother's doctor and whether you can either write or speak directly to him/her... If you can email her doctor directly about dementia concerns, you can join her at the appointment and hear about everything. You'll probably have to talk your mother into the first appointment and tests. You can always suggest them as a way to rule out something bad. But don't wait too long. The earlier you know, the earlier you can start treatment, and hopefully slow down the progression.

In the meantime, do some detective work at your parents' house, and find out who their doctors are, what medications they take, and where the important financial documents are. If your Mom is forgetting things, look for piles of mail in cabinets and dresser drawers, and check whether the bills have been paid regularly.
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Thanks very much for these thoughts. Going to the doctor to discuss my concerns (and making it clear that I'm not trying to get any confidential information) sounds like a very good plan. I'm going to try that first.

I think my making respite arrangements would be perceived by my mother as a huge betrayal - she wants to be in control of this situation, and as much as possible I do want her to be the one that makes the decisions. I'd like to find some way to help the process along without her noticing that I'm doing anything...

Yes, there's definitely cognitive decline. I think reducing stress would go a long way to improving the memory and cognition problems. Anyway, thanks again for your comments.
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Orange, it could be the stress causing the decline in your mom. It is a very difficult job caring for our loved ones.

Do the folks have POA's in place? Call mom's doc or send a letter. Will mom let you go to the doc with her.l?
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orangepurple Feb 2019
Thanks for these comments. Yes, stress is almost definitely the main culprit - there may be other factors too.

I don't know what the POA situation is - having arrived here not long ago I'm still trying to work all that stuff out.

It's very unlikely that she'll let me go to the doctor with her. I've actually been trying to include myself in my father's doctor appointments, with no success yet. My mother sees my father's care as her responsibility, not mine.
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Most family doctors will listen to the concerns of family members, although unless the HIPPA forms are signed they cannot discuss the patient with you,

I have done this in the past regarding my former MIL. She has at times acted very erratically and I reported the incidents to our shared family doctor. He was happy to know, as he said he sees her every 3 months for a few minutes and only has her word for how she is dealing with things.

It maybe that your mother is dealign with cognitive decline herself and is unwilling or unable to cope with it. Especially when you mention her forgetfulness and denial.

My Mum at almost 85 is physically in great shape and mentally good too, but she is aware that she is getting forgetful when it comes to dates. She dilligently writes everything on her calendar and checks it daily. So at this point I am not too worried, when she stops using the calendar, then I will have to step in to some degree.

What would your Mum do if you make all the respite arrangements and presented it as a done deal?
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orangepurple Feb 2019
Thanks very much for these thoughts. Going to the doctor to discuss my concerns (and making it clear that I'm not trying to get any confidential information) sounds like a very good plan. I'm going to try that first.

I think my making respite arrangements would be perceived by my mother as a huge betrayal - she wants to be in control of this situation, and as much as possible I do want her to be the one that makes the decisions. I'd like to find some way to help the process along without her noticing that I'm doing anything...

Yes, there's definitely cognitive decline. I think reducing stress would go a long way to improving the memory and cognition problems. Anyway, thanks again for your comments.
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