Mother is awaiting an assessment for dementia. In respite care as home carers couldn't cope. Anyone else been in this position?

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Mother is awaiting an assessment for dementia. In respite care as home carers couldn't cope. Anyone else been in this position?

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Mother had three one hour visits a day from a home care agency who now say they can't staff these and she has become rude and difficult and carers don't want to go in and have said she needs some respite care. Manager of her retirement development thinks she now needs a nursing home. I am awaiting GP assessment which was begun but discontinued during covid period. I have had to take her, crying and protesting and against her will, to a nursing home while things are sorted out. She is saying I have kidnapped her and am spending her money (on the home) without her consent - the latter of which is true but I have LPA. She insists she is going home (she wouldn't be able to arrange this herself and wouldn't be able to cope without carers). A family member has said this is illegal and I am out of order as she hasn't been assessed for mental capacity yet. What else could I do? I couldn't move in with her as I have carer responsibilities at home. The family member says I should have found another agency, or used two different agencies. When the two weeks of respite are up I can't take her home without carers in place and in my view full-time care is now needed as she wasn't coping well when alone - constant phone calls and confusion but also with good, lucid days which seem to have convinced some family members that she is okay. Show-timing maybe. Anyone else been in this position? I need advice.

Alzheimer's & Dementia Care Decisions Home Care

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I would like to thank all who replied to me with their good advice and let you know that the interfering family member has backed off and mother likes the nursing home and wants to stay there permanently. Problem solved! Thanks esp to Countrymouse as her experience and expertise on caregiving in England has been invaluable. I will no doubt be asking questions about nursing home life in future but that's for later! Happy November all posters.

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Although it is horrible to watch a parent deteriorate I think it is best that your dear mum be placed in a care facility. She can be looked after 24/7 & you will know she will be safe. My mum had Lewy Bodies dementia & a decision was made by a social worker to keep mum in a care home as her behaviour was up & down. Did I feel guilt yes at first but knowing your parent is being looked after 24/7 allows you to carry on living your life & looking after your own family. You can visit her as much as you want & take her treats ,flowers etc. Your mum's behaviour cannot be helped it's the disease. But to know she's warm & fed well should help you to feel more relief. She won't be lonely & there are activities for her to do. Her room can have a few items from home. You will feel guilt ,anger ,sadness that is normal. You are grieving for the mum you knew & have lost to this disease but it's just another different chapter. Visit a few homes before you make a decision. Hope this helps. Best wishes to you & your mum.

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Thank you Drivesmemad3 for your sensible reply. It is good to hear from people who have weathered this and looking back know they made the right decision. Your kind words are appreciated.

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When people have mental and physical issues that are often above and beyond what caretakers are able to handle - physically or emotionally - and the patient is very abusive and difficult to handle and creates all kinds of problems for everyone after all attempts to keep "calm" have failed, then I see no other solution but to place them into a facility. They bring this on themselves and no one on this earth should feel guilty for doing this. That is where they belong. None should tolerate abuse no matter who or why or where. Whatever you do and whatever it takes, DO NOT BRING HER HOME WITH YOU UNLESS YOU WISH YOUR LIFE DESTROYED.

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Thank you Riley2166. No, I couldn't bring her home anyway as I have other serious caregiving responsibilities there. I accept the abuse is part of her disease and am sad - but know she does need specialist care by kind and experienced people.

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At first I thought my 65 year old brother had early onset dementia. He lived alone and since I live 1500 miles away I couldn’t stop in and see what his apartment looked like. I knew he wasn’t taking meds and his problem solving ability was out the window. My guiding goal since then has been safety, and hopefully happiness. I got POA while he understood he couldn’t remember.

I knew he wouldn’t tolerate caregivers coming to his apartment so I got him into assisted living. That didn’t last long since he was diagnosed with a massive brain tumor that morphed into a glioblastoma. Behavior problems, getting an infection, and then Covid resulted in getting bounced around between hospitals and nursing homes. After two months of this I put him into hospice. On the Medicare website I found a fabulous hospice and an excellent nursing home with a five star rating for patient. It is possible to find good places. My hair isn’t falling out and I’m sleeping again.

As for the armchair caregiver family member, forget them. The manager of her retirement has more knowledge and understanding than the family member. Sometimes a GP or PCP isn’t well equipped to asses someone for dementia, especially when the loved one puts on a good show for the doctor. That’s where a neurologist helps a lot more.

Her safety and your sanity are the most important goals to pursue. Remember mom does have dementia and she simply isn’t capable of making decisions. And family hasn’t lived with her. They have no say. They can’t wrap their head around the fact that she’s so incapacitated and so they keep hoping an assessment or working with a different agency will have better news. Good luck!

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Thank you katepaints. Such a kind and sensible and reassuring reply. I hope that one day in the not too distant I'll be in that better place where you are now. Yes, I feel the Manager of her retirement development has the best understanding of anyone of her day to day difficulties and needs.

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Bertie,
I was a wreck when we first had to place my mother.

She was scared, confused, and angry.

It is a grief that just keeps giving.

Another poster reminded me that at the point where we were, it was just a choice between two terrible situations. There really wasn’t any “good” choice-definitely not any option that would have made my mother “happy”.

My mother has been living at her Memory Care Assisted Living for almost a year now. I am satisfied that she is well looked after.

I’m sorry that you’re facing all of these difficult challenges.

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Tell your family member to BUTT OUT while you sort things out for YOUR mother, on her behalf, and for her wellbeing. Period. Nothing like an armchair critic to do nothing and then tell YOU what YOU'RE doing 'wrong' while you're half-dead exhausted with worry and fatigue!

The SNF your mother is in should be able, quite easily, to administer a MoCA exam (95% oral) to her to see where she's at with the dementia; she'll be scored on a scale from 1-30; 1 being the worst and 30 being no dementia at all. It sounds like your mom IS suffering from dementia, based on her behaviors you describe. Know this: dementia is not constant; the behaviors change from day to day, sometimes from hour to hour. She can be lucid one minute, talking about what happened a decade ago, then not know what DAY it is the next minute, talking about 'where's the baby I need to take care of?' when 'the baby' is now 36 years old. Just b/c your 'family member' sees or hears your mother at a good lucid moment does NOT mean she is not suffering from dementia, not at all! In fact, some folks are so good at Showtiming that they can even fool a DOCTOR into thinking they're fine! Why? Because they've mastered the art of Small Talk! Old muscle memory can remember how to say things like "My don't you look lovely today, what a pretty dress! How is the husband & family doing?" That's surface talk and has no depth to it, which is why they can pull it off. Ask them a real QUESTION and that's when it all falls apart and the show is over. That's the best definition of Showtiming I can give you; my mother is the Queen of it and she's 95 with advanced dementia!!! Mind-boggling.

I live in Denver; covid is not dictating how ANYTHING is done anymore in the medical field. N O T H I N G. A MoCA exam should be no problem to give to your mother; it takes 15 minutes. She does not need an MRI b/c in most cases, vascular dementia or other dementias does NOT show up on an MRI! My mother's hasn't, and she was diagnosed in 2016 via a MoCA exam and a score of 18 out of 30. The doctors said she had 'progressive dementia' and they were right! Her last MoCA score in 2019 was 10! Here we are today, 5 years later, and she's progressed down the dementia highway to an advanced level and can't even use the phone anymore. And when she does, she's trying to lower the volume on the TV set with it.

Keep the SNFs feet to the fire about testing mom and go from there.

Wishing you the best of luck tuning your 'family member OUT' and getting mom the help she needs. It's a rough road you're on and you're doing nothing 'wrong'. Keep that in mind as you proceed.

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Thank you lealonnie1. It's so reassuring to get sensible advice and reassurance to be confident in what one is doing.

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Family members are always quick to criticize, but slow to actually help.

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I think if she needs care and there is none at home, the state will step in and find a nursing home bed. We had to go this route to get my brother placed in NJ in 2016. he qualified for Medicaid, my parents drug their feet ( did nothing) as my brother slowly starved to death in his apartment. The aide went around my folks and worked with me(POA) , 60 instead of my folks at 85 and wiffy....., to get my brother placed and help cooking and eating.

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BertieBanks: Imho, perhaps your mother needs to see a neurologist.

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Thanks Llamalover47 - we are doing our best now to get a diagnosis.

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In the meantime while you’re waiting for the assessment, maybe you can talk to her doctor about low dose behavior medication? We had to do that for our loved one. It’s just enough medication to tone down behavior issues the caregivers were dealing with. Things are so much better now! Our family member was accusing our POA of the same thing, stealing money, etc. This was not the case. All monies are going towards the care for our loved one. Don’t worry about what others think/say. Good luck to you!

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Thank you!

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Tell the family member to step and do it. Hand over the reins.

Im sure a lot people here will agree that finding the right caregiver can be a long process. If your mom can stay at home she’ll be happier but give her a caveat that she will have to have someone with her, someone she chooses, not you. And then start interviewing. We went though 15 before we found two that mom got along with. One I almost fired for a mistake but decided no. And she turned out to be wonderful and stayed til the end. Choosing the right caregiver is a long process and look outside of agencies. Agencies usually take 30% to 70% if caregiver pay so there are a lot of very good independents looking for work and they know how to handle dementia.

Dont try to take on more than you can handle get help from your siblings. The one who griped, get them to come sit with your mom for a few days. Good luck

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Thank you PatienceSD we are looking at all the options carefully.

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As a stop gap measure if she must leave the current place where she is, you may have to set up care givers from a different agency, if possible. Let them know her difficulties, and insist that they send experienced care givers. Can you consult an elder attorney about your authority to make decisions about where she should live, while you are awaiting her assesment? Even people with dementia can find home care givers that know how to care for them, although the job market for care givers is very tight now.

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I don't know how far the "insisting" will get. We have a reputable agency sending out a caregiver three days a week. Usually one day a week is a no-show. So we feel lucky to get anyone. I have a feeling if we insisted on anyone rather than reasonably competent with a pulse we would find ourselves without any help at all for my in-laws.

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I suppose it amounts to, do you trust what these professionals are telling you? They are saying her care needs are not being met. You admit to not being able to make them yourself. You know what you have to do. If she could care for herself she would be. The family member is well-intentioned but out of touch with reality. It is your responsibility as your mother’s advocate to make her understand the gravity of how UNSAFE it is for your mother to look after herself. Whenever confronted by a person who is doubtful of a person being able to look after themselves, always always always bring the conversation back to SAFETY. Talk her though ‘what if’ scenarios. What if there is a fire? What if she falls and can’t get back up and no one knows for days?

Making the hard decisions are never easy. You know what the right decisions are, though.

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Thank you Lizzybitty for your kind and sensible comments.

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I just skimmed the responses so someone may have answered this but why are you not taking her to a Neurologist. A GP, IMO, is not qualified to give a diagnosis of Dementia. There is testing that needs to be done. Labs to rule out anything physical. MRI to see if there are signs of Dementia.

Never heard of Dementia described as a behavioral and emotional thing. Yes, both are involved but its because the brain in dying. The person is confused. And it depends on what part of the brain is evolved when it comes to emotional and behavioral problems are and the type of Dementia they have.

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GP conducts first examination then refers patient to a memory clinic if appropriate, often with an MRI or contrast CT ordered first. At memory clinics the patient is seen by a clinical psychologist for in-depth testing, followed by an interview with a specialist psychiatrist (armed with the patient's medical history and results of any investigations). Ongoing care (depending on the diagnosis, of course, because it won't always be as expected) will be in the community, led by the GP and supported by the Community Mental Health team.

This is the theory, anyway. You can imagine what Covid has done to the practice.

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The pandemic has really been destructive to the proper care of our elder loved ones. Tests and assessments are sometimes very delayed. After her visit to her primary care physician, she will probably be referred to a neurologist and/or neuropsychologist for examination in order to determine the level of her mental decline and perhaps get a prediction of how it will progress---although no one can really determine that for certain. As for your other family member(s), set a boundary. Let that family member know the steps you are taking to have her evaluated, that due to COVID it takes more time than before, and that you will decide on a plan after those assessments. In the meantime, you primary job is to keep your loved one safe, which you are absolutely doing. If your other family member intrudes again, "repeat, rinse, repeat" and don't engage any further other than to say, as others have advised, that they return to the area and make these arrangements themselves (do they share POA with you?). Once you do that, I'm sure they will cease commenting.

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Thank you horticulturist for your kind and sensible advice.

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It's so easy to be an "armchair quarterback" - I suggest you tell that family member that they're perfectly welcome to take over her care, worts and all. And if they're not willing to step up to the plate, their advice is no longer wanted.

Don't wait for the GP's assessment. You already know the problems and truthfully, there isn't much the GP can do anyway. From what you're telling us, she probably ought to be in assisted living. However, that's costly. So, what can you do?

Let me give you some online resources from the real experts:

Karen Stobbe: Website http://www.in-themoment.net/karen-stobbe.html
Videos: https://youtu.be/RyQz3RvUB0c

Teepa Snow: Website https://teepasnow.com
Videos: https://youtu.be/MA9s2vZflw4

And I invite you to contact me as well (I'm a dementia/Alzheimer's expert)

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Let me explain why I use the term "Real experts"
So far, medical remedies have had very limited to no effects on cognitive disorders. Dementia is a behavioral and emotional issue more than a physical disorder. Even if a person does experience a memory boost from a medication, the most important "remedy" is for his/her carers to understand effective approaches and communication. There are a few of us who specialize in this field. We all have had years on-the-ground/hands-on experience.

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I agree with the part that you should seek other agencies as there are plenty to choose from and they should have Caregivers that know how to deal with people with dementia.

Please din't put her in a Nursing Home as you will be signing her death sentence.
She will absolute ly loose her will to live. They are all understaffed and if the patient is deemed trouble, they will tell you they need to give the loved one meds because they are depressed, ect. In reality, the drugs just make them zombie like where as they are easier to handle.
My 70 yr old sister is in one and she doesn't have dementia but had to go after having surgery to get therapy to be able to sit up and walk with a walker.

I walked in yesterday to visit and I could hear her moaning and groaning before I entered the room.
She was laying soaked in pee, pad, sheets, ect.
Her privare area was swollen and raw.

Her old bed linen was piled on the floor next to her bed still and this was 2PM in the afternoon.

They don't answer the call button and she is totally unable to even sit up.

The 1st thing she said was Beverly, get me out of this Hell Hole, I'm going to die here.

She was freezing and only had one thin sheet and thin blanket.

We had left a nice sift warm blanket with her and they said it was being washed and it was.

They didn't give her therapy saying she refused.

The Therapist from the Hospital told me that is what will happen at a Nursing Home.

I told them that was the reason my sister was there and that with a little coaxing or persuasion she would do it, as she is in pain from her surgery.
I told them to call me when they're in the room and I would get her to do it.

Hire a Caregiver for mom, install camera's in her home to keep an eye on her. I installed NEST Cameras at my 96 yr old Dad that stays at his home with 24 7 Caregivers.

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I would be moving my loved one from a place like where your sister is.

They are not all like this and she obviously needs her advocate to get their a$$ in gear and find a rehabilitation facility that will take care of her. I would have been ripping people new orifise' if my loved one was being treated like your sister. WTH is wrong with you to NOT intervene on her behalf?

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They need to butt out or come and care for her. Always easier on the outside looking in. Do what you think is right and don’t second guess yourself . Good luck💜

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Thank you.

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The focus here should be on your mother's well being. Think long and hard about where she will be most content and safe. Is it possible to keep her in her home, have in-home care that is not constantly changing, and monitor her through wifi cameras set up around her home? Having 3 different aides a day can be confusing for an elderly person - put yourself in her shoes. You have 3 strangers with 3 different personalities in your home essentially taking over. It's a hard thing to accept no matter who you are. Add a touch of dementia to that, it's downright scary. During her lucid moments, explain that you love her and will not abandon her. Try to explain the situation in a way where she understands and her input has value. I am not judging - I am just advising you that if you cannot give her what she wants - namely to live out her days at home - then make sure wherever she ends up is a place where she will still feel loved, valued, safe and content, surrounded by capable and caring staff.

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Best advice on this thread!

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Tell family member if they feel they can do a better job you will be happy to Pack a bag and drop her off at the family members house who seems to think your not doing a good job. And if they take you up on it call them daily and let them know how much you disapprove of how they and handling things. As you have power of attorney also let them know you will undue everything they try. Than fix yourself a cup of tea, open a box of chocolate and enjoy the moment. Because for sure you will get her back as soon as they figure out what a joy she is.

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How is that realistic or helpful?

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Ask your Oh so helpful family member if they can take her in whilst an assessment is being arranged. You seem to have a number of professionals saying she needs to be in a care environment. Don't take her home until assessment is done - find a facility that will do respite care if the family member cannot take her and concentrate on what you think it right. We had 6 months of battles with mother when we moved her into a care facility but fortunately we were supported by family. In respite they will be able to assess her needs seeing her 24/7 which is what she needs to happen. Good luck xx

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Thank you TaylorUK - I am now telling mother and family that she needs to stay in the nursing home until an assessment is done (and we have a diagnosis of her difficulties and what the progression is likely to be) when we will review the situation. Everyone now thinks this is fair enough. Hopefully by then she will have settled and want to stay there. I think she has made a friend there: fingers crossed!

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If this is still up in the air, could you do a ‘deal’ for family unity? You will help if the key family member spends 3 full days sitting with visiting her in the NH to get a real idea of how she will cope, plus 2 full days with her at home to get a clear picture on the spot. And of course if mother wtill wants to ‘go home’. That’s less than a week of key family member’s time. Explain about ‘showtiming’, and repeat that you don’t want mother to be a football between different family members. For you, the NH should give you 2 days at home without it being ‘leaving’. If the key family member won’t commit to a week to check things out, you are in a very strong position to justify your take on it to everyone involved.

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Another option is to take her to a hospital for an involuntary psychiatric admission. Since her home caregivers feel they can not care for her - probably feel threatened - then an inpatient evaluation is in order. She would be assessed for medical health problems and psychiatric health problems. Both would be adequately addressed and social services can help with her placement after she is stabilized.

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Thank you for your sensible reply.

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Give up the LPA. Now. Let the joint LPA and the "sibling abroad" take over. Then, when you see that your mother isn't faring well after a short time, call Adult Protective Services and report it. People like you describe HAVE NO CLUE what the responsibility and decision-making is like.

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Leave her where she is, and tell the family member to piss off.

From your update post below it sounds like a good NH and that's she's adjusting well. She'll probably like being around people her own age, though will never admit it.

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Thanks Zippy Zee: this is exactly what I have done and I'm keeping my fingers crossed she won't want to leave this homely, caring and sociable place to go home to long, lonely hours between carers.

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You could try changing the schedule of in-home care visits to the recommended 4 hour minimum shift.

No one wants to come for just one hour. Having 3 visits daily is a lot of coming and going, could be confusing for Mom.

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It's a slightly different system, Send - not least because our travelling distances tend to be much, much less. One hour visits are common among private providers, and in the public sector they can go right down to 15 minutes for welfare checks or medications.

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To use your LPA you need to register it - have you already passed this stage, or were you waiting for the formal assessment of mental capacity? Which sort of LPA is it, or do you (both) have both?

It is no part of your responsibilities to move in with your mother and provide for her daily care needs, whether or not you have other inescapable commitments. Sit easy on that point.

Family members such as you describe can be a thorn in one's side. So she thinks you should have found an alternative "package of care," does she? Oh right. And she knows where to get one, does she? No. Thought not.

Is she just tiresome or can she create meaningful trouble?

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Thank you Countrymouse. I have both Health and Welfare and Property and Financial LPA. The trouble I fear is that our mother will be moved home without the proper care needed as my sibling believes her when she says she will be okay there. What I am hoping is that she will settle into the very good NH and want to stay there! She was not happy spending large parts of the day alone in her own home so there is at least a chance that this might happen. There is always trouble between my siblings I just don't want our mother to become a football between different goals.

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What is the relationship of the family member? Can you just ignore it? Perhaps the simplest thing is to ask this person to take your mother in, or to arrange the care for her themselves. Even to spend a couple of full days with her in the facility to see what things are like over a more extended time – we all know about show timing!

It does sound as though in a way you have ‘kidnapped her’, but you can’t see alternatives, at least none that are likely to work (eg multiple agencies). That’s why you should pass the responsibility for finding alternatives to your family member. And if they continue to say that it’s ‘illegal’ suggest that they go to the police about it! It is inevitable that the police will ask them what they suggest should be done about it all, so they need to get ready for that..

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Thank you Margaret. My mother did at first agree to the respite and I took her to see the Nursing Home which she agreed was nice. I made all the arrangements. On the day she didn't want to go and called me names and phoned family to say she didn't want to go, that I was "sending her away". When I told her the usual carers would not be coming she knew she had no alternative but to come under protest absolutely cursing me. The Nursing Home was great: they reassured me this was not unusual and I was not to worry and could phone at any time which I have done only to receive more verbal abuse - although she does seem to be mixing with other residents and is eating well. The family member is a sibling who lives abroad and is now phoning around other family members to get someone to fly over and take her home and arrange new carers. One of them is also LPA which is joint and several but he has no idea how our mother's cognitive skills and short term memory have deteriorated and no experience of the kind of care needed and probably wouldn't stay long enough to find out - leaving mother maybe unsafe (and me to pick up the pieces). Even if mother was declared mentally incompetent either LPA can act on their own. .

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Mother is awaiting an assessment for dementia. In respite care as home carers couldn't cope. Anyone else been in this position?

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