Mar 20, 2024

Worried family wants advice from aged care staff after placing Mum in respite

Worried family wants advice from aged care staff after placing Mum in respite
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Recently, my family and I made the difficult decision to place my 67-year-old mother in an aged care home due to her declining health. She was diagnosed with Alzheimer’s disease and vascular dementia in 2022, but her need for assistance with day-to-day tasks began back in 2020 when she was initially diagnosed with burnout from work.

Over the past four years, we’ve watched as her condition deteriorated, to the point where she now struggles to comprehend questions, hold meaningful conversations, or even write her own name.

For nearly two years, she’s required help with showering and dressing, and she was on a level 4 home care package before we decided that aged care might be a better fit for her needs.

In the last six months, things have taken a turn for the worse. She’s lost her ability to use the toilet independently and now requires constant prompting to eat and drink. Recently, she’s even started to wander at night, and we had a frightening incident where she tried to drink bleach after mistaking it for a beverage.

My mother is currently in respite care with the possibility of going permanent.

The escalating safety risks were a significant factor in our decision to move her to aged care. We believed that having medically trained staff on hand, as well as the added level of safety and security, would be beneficial for her.

Plus, she’s always been very active and sociable, so we thought she might enjoy the company and activities available in an aged care setting.

However, despite our best intentions, the transition hasn’t been easy.

We have had family visiting every day in the first week, but Mum has broken down in tears and even hyperventilated upon seeing someone she knows. Even though she’s unable to verbalise her sadness and frustration, her non-verbal cues suggest she’s saying “Why am I here? And thank god you’re here to rescue me,” whenever she sees a familiar face.

Mum is also a caring person, so her placement in the Memory Support Unit (MSU) has put her in an environment with a number of people who have a lot higher care needs. I think that she worries about what is wrong with all of her fellow residents.

She was placed in MSU because of her heightened risk of wandering, but I also wonder if it’s the right environment for her.

Everything that I have mentioned has left my family and I questioning whether we’ve made the right decision. Caring for her at home was becoming progressively riskier, but it definitely feels as though we are putting her physical health before her mental health. 

So, I’m turning to the aged care staff for their advice.

Have any of you seen similar situations? And for those who work in aged care facilities – or families that have gone through this – what advice would you offer to families like mine who are struggling with this decision?

Any insights or words of wisdom would be greatly appreciated. Thank you all in advance for your help.

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  1. We can understand your frustration, as this happened to my father-in-law who was a very proud man. Unfortunately, under the advice from his GP and his surgeons, we had no alternative but to seek out an Aged Care facility. He went into a memory support unit at Millward in Blackburn, Victoria which is now Cavalry Health, and the staff were truly magnificent. Between his wife, his daughter and me and his friends, we tried to visit him as much as possible, but he had Dementia with Lewy bodies and every day you could see him going downhill fast. He could never have stayed at home, he was too much of a liability, and we knew he was getting 24 hour care in the aged care facility. It hurts so much when we had to leave him after our visits, but we had to be brave and suck it up. The facility he was it had a lovely little cafe, so we used to take him out of the environment, take him to the Cafe where he would munch on his Chicken Chippies, try to drink a coffee from a straw, followed by a cake. The Cafe also led out to a lovely courtyard, when, on a nice day, we did a few laps pushing him in a wheelchair. This also allowed my wife and I to get acquainted with other families going through the same ordeal.
    I can honestly say this bought a smile to his face and then we had to leave him. It was very sad when we lost him, 6 years ago.
    Both my wife and I work for a Financial Planner that specializes in Aged Care, my wife works full time as a senior paraplanner, and I work one day a week in promoting our services. Part of my job is getting our brochures into Aged Care facilities and one of our brochures is Understanding the Cost of Aged Care. I have been very fortunate to take a tour of many of the Aged Care and Retirement Living facilities in Melbourne where I get to meet the admissions officers, their staff and best of all some of the residents. I am sure there are thousands of people, going through what you are going through, and my wife sees and hears about it every day, from people seeking advice. I do hope everything works out with Mum and you don’t feel so guilty about your decision to seek out an aged care facilty full time.

  2. Hi – I sympathise with your situation – we moved my mum to a nursing home from a rehab facility following her stroke because she was deteriorating further in an acute care environment with delirium and COVID constant risks. Mum was not cognitively impaired but was also a very caring person and worried for her fellow residents. We found the best home through word of mouth and government ratings but even with this the access to the medical care mum needed only came through admission to hospital which caused her to deteriorate further due to the absence of any rehab or wellbeing interventions (other than through her children). In hindsight I would have admitted Mum to respite and worked harder on getting her the best home service support rather than permanent admission. Despite Mums subsequent death due to her stroke related conditions the staff at the care home were faultless. I’d suggest the best option for your mum would be a dementia friendly care home that is genuinely person centred. Best of luck.

  3. This is a very difficult situation to be in. There is no easy answer. If your mother is at home, there are risks and considerations. If she is in care, there are risks and considerations and her sense of displacement will be visible for some time. Your caring will not end because your mother is in a new location. What will change is that you will have renewed energy in supporting her and your attention will shift to other ways you can do this with her. After, my personal grieving of having mum in care, what my family do for our mum is maintain family gatherings, and visits to her, and activities we use to do. We have had to learn to do things a new way, like birthday parties at the new home for example. We have also become very familiar with staff so we can all work together, and so that we as a family have confidence to speak to staff if and when we feel we need to – and there is a lot to learn about a person, your mum would be no exception. We are almost 2 yrs on, and mum is more settled now but it is never the same. Her connection with us is still as strong as ever, and she knows this. You may find this is not the right time for the transition and that is ok too.

  4. My father in law entered RACH due to having 24 hour care needs that, even with a family roster staying overnight, was not sustainable. He needed to move into the MSU within a few months due to dementia and risk of absconding.
    Due to his level of upset, frustration and wandering, we initiated a review by Dementia Support Australia as, despite the best efforts of staff and diversional therapies, once staff were out of sight, he was seeking support and reassurances. The staff were supportive of the referral, as a family we were fully aware they cannot possibly offer a client 1 on 1 care and we all wanted the same outcome for my father in law, to feel settled.
    We have so far had an inital review and the DSA HP is collating a full picture of our family member and has touched upon all aspects, physical, emotional, social, etc to build a plan to assist him and the staff.
    It is early days but we are hopeful this will help as having our father in law unfortunately is not an option

  5. Hello . you sound like a very caring and empathetic family. Inherited and learned from Mum by sounds.
    Understandably a difficult decision but you need to keep mum safe. And her changing needs.
    You expressed well and painted a picture of how it is.
    It can be alarming for a caring, sympathetic empathetic person to be amongst a group of people with severe cognitive decline and behaviours
    And as mum has lost the ability to verbalise makes harder.
    As it sounds like mum is in memory support unit for her safety, as wanders and perhaps may get frustrated if cannot just leave, if situated in the general area to reside.
    You ve probably done but perhaps reach out to lifestyle team there . And get mum involved in as many activities outside menory support unit too.
    Staff working daily in the memory unit may be able to get mum involved in helping if she wanted eg set tables. Folding serviettes. A wee job to do regularly. May help feeling of redundancy that she could possibly be feeling.
    Perhaps family could send a postcard or wee note in weekly if unable to visit With cheery content. Could store in folder with clear plastic and seal individually for safe keeping.
    Life throws curved balls in sometime.
    I wish your mum and your family all the best .

  6. It’s clear that you and your family have been facing an incredibly challenging journey with your mother’s health decline, and the decision to transition her to aged care was not taken lightly. It’s natural to feel conflicted and uncertain about whether it’s the right decision, especially when faced with such emotional upheaval.

    First and foremost, I want to commend you for your unwavering commitment to your mother’s well-being. Your dedication to ensuring she receives the best possible care, even when faced with difficult decisions, is truly admirable.

    The feelings of guilt, doubt, and sadness that often accompany placing a loved one in aged care are entirely understandable. It’s important to acknowledge and validate these emotions while also recognising that you made this decision out of love and concern for your mother’s safety and quality of life.

    Regarding your concerns about your mother’s mental health and the suitability of the Memory Support Unit (MSU), it’s essential to communicate openly and regularly with the aged care staff. They have the expertise and experience to assess your mother’s needs and make adjustments to her care plan as necessary. Express your concerns and observations regarding her emotional well-being, and work collaboratively with the staff to explore alternative options or modifications to her living arrangements if needed.

    Additionally, maintaining consistent visits and engagement with your mother can provide comfort and reassurance during this transition period. While her initial reactions may be difficult to witness, your presence and support are invaluable in helping her adjust to her new surroundings.

    Seeking support from other families who have navigated similar challenges can also be immensely helpful. Sharing experiences, insights, and coping strategies with others who understand what you’re going through can provide much-needed comfort and perspective.

    If, after working closely with the aged care staff and exploring adjustments, you still feel uncertain about whether the current location is the best fit for your mother, seeking assistance from a placement provider such as My Care Journey could be a valuable step.

    Choosing a high-quality placement provider will have the specialisation required in understanding the unique needs and preferences of your mother and will work closely with you and prospective care facilities to ensure the best possible match. By leveraging their expertise and network of resources, they can help identify alternative care options that better align with your mother’s specific requirements and preferences.

    I know from direct experience that My Care Journey offer personalised support and guidance throughout the placement process, helping families navigate the complexities of finding the right care setting for their loved ones. Their collaborative approach fosters communication between families, care providers, and other stakeholders, ultimately facilitating a smoother transition and improved outcomes for everyone involved.

    Exploring options with a placement provider can provide additional reassurance and peace of mind, knowing that you’re actively seeking the best possible solution for your mother’s care needs. Remember, your commitment to her well-being is commendable, and there are resources and support networks available to help you navigate this challenging journey.

    All the best to you and your family as you continue to advocate for your mother’s care and seek the most suitable living arrangement for her. You’re doing an incredible job, and your dedication is truly inspiring.

    Warm regards,
    Martina Chelini
    General Manager
    CareCFO

  7. The move into care is often traumatic. Given mum is currently in respite the question you as a family will need to wrestle with is what is the BEST option for mum. I would suggest a few sub questions should include:
    1) Is mum safe at home?
    2) Is it better for her to move now before her dementia declines further?
    3) Does mum being in care mean your energy can be directed towards being a daughter/son rather than a nurse/carer?

  8. You are doing a great job of looking after your mum and and have hit the nail on the head of how most of the aged care system seems to prioritise physical care and safety over psychological care and safety. Going into institutional care is one of the most challenging life transitions. The MSU does not sound like a good match for your mum. You may want to look into some less institutional alternatives e.g. Community Home Australia, Group Homes Australia, Korongee Dementia Village, Montessori aged care, the Eden Alternative etc.

  9. Hi. My experience is with my 91 yr old mother with Alzheimer’s Disease in aged care for past 2 1/2 years. She seems to be at a similar stage as your Mum. My family provide twice daily visits. She reacted same as your Mum when she first went there. It took at least 6 months for her to settle down. Expect deterioration. Some people do it faster, some slower. You have to remember that nurses in aged care, while they have the qualifications, most do not have the experience of being a nurse in a hospital so there are huge gaps in their nursing care capabilities. You must be vigilant at all times about your Mother’s physical and mental health. Staff are simply overworked and there is not enough of them to do the job to the satisfaction level it should be done at. In my mother’s facility at night, there is one Registered Nurse to look after 119 residents. That is the minimum legal requirement set by the government. I have asked the question to managers, if there are 2 or more medical emergencies at night, who gets care first. Locked dementia units are not nice places. They are incredibly loud and sometimes residents are violent towards the other residents. We are blessed in that Mum is not in a dedicated dementia unit so basically she can move around in her wheelchair with people at different stages of dementia and some have no dementia. There is a locked main door though so she cannot get out but it doesn’t feel locked in. Is it possible for your Mum to be put in the general area and monitored? We have a lady who used to know the code to go out the doors so the facility put a sensor in her walker, with the agreement of her family, and put in sensors outside the door, that set off an alarm when she walked through the door. When you say you visited each day for the first week, how much now? Don’t slack off in visiting. She needs it. Not only that but family need to be looking out for her on different levels. Keep an eye on skin splits/injuries/pressure wounds/that staff are actually feeding her/bruises etc. I still feel sad and guilty when I think about my Mother’s reaction to going into aged care. It was an extreme reaction but she was a lady who was still doing 10 km fun runs each weekend aged 86. I can’t emphasise enough how important it is for her to see a familiar face EVERY day. That gives you the opportunity to keep tabs on her care also. Even well run aged care facilities are not good places. Staff make mistakes and hurt residents. Sadly, providers are more interested in the profits to be made from aged care than the welfare and happiness of their residents. If a family member goes every day, you keep staff on their toes and you can nip in the bud any issues that could adversely affect your mother. Bear in mind, there are some good people in aged care but not enough. The pay is not good enough for the job they do, even with the new wage increase. They are overworked. Too much responsibility on too few staff members, especially when they become 2 assist with or without a hoist, which I guess your Mum will probably become if she continues to deteriorate. I believe the twice daily visits to my mother are helping her stay connected to us in spite of the dementia. It’s difficult to achieve and after time some family members drop back in their visits which puts an incredible strain on the ones who do the most. Your Mum is precious and worthy of your vigilance in watching over her. Please do not leave it to the staff to do the best for her. It’s a joint effort with family. I’ve had too many negative things happen to my mother by staff. Give her constant reassurance and show your appreciation to her for giving you life and caring for you until you were independent. Visit her daily if you possibly can. Take her out of the locked unit when you visit if you can. If she is in a wheelchair, push her around outside. Take her for a walk outside if possible. Just wondering how your mother had access to bleach? That’s a breach in duty of care by the facility if cleaning staff left it on a trolley that residents had access to. If that is the case, personally I would put a complaint in to the General Manager and possibly the Commission. That is just too serious. It’s not her fault. It’s the fault of whoever left a toxic liquid around dementia residents. That should have repercussions. If someone doesn’t get into trouble for that, they will do it again. Do not assume your Mum is in safe hands and forget about her. Staff are not miracle workers. Obviously, she requires full time care and you cannot provide that yourself but you have to be very involved in her care. There are aged care residents who get zero or few family visits and they are the ones who I see can become neglected. My best advice is don’t expect staff to take care of everything for your mother to the standard you would like so you must be there regularly to keep an eye on things. Speak up if you are concerned about care issues. Read the laws surrounding aged care and refer to them if necessary if you see deficits in your Mum’s care. Go to the Aged Care Commission and put in a complaint if you are unhappy with care. She cannot speak up for yourself so you have to be her eyes and ears. You have to work out what is the best care plan for her and ask staff to accommodate if they can and don’t be afraid to complain about deficiencies. Aged care facilities are great places if you are just needing help with cleaning and making meals but if you are declining with health issues, they are not. They struggle to meet the needs of deteriorating residents. It’s a frightening reality.

  10. Well done, it’s a very difficult decision and you and your family are doing your best. Ideally aged care is provided in small household environments so that residents can live among other people with a similar care profile. I’ve seen this work for my mother in law with Alzheimer’s who lived in a cottage with 14 people for three years, dying there peacefully, surrounded by family and the consistent team that cared for her. My 90 plus parents are now in a home that is less appropriate from a dementia design perspective but as mum doesn’t have a formal diagnosis of dementia, and her symptoms are mild, my dad and her family are able to keep her in a general aged care setting which is appropriate of her and which she enjoys. If that approach is not available, advocate for the most appropriate setting for your mum and yes, you will need to be vigilant that busy staff are aware of her specific needs. Her reaction to being in this new environment is very familiar and will most likely settle in time, if the care and environment are, on balance, ok. Speaking of the location as home, being as homely as you can be (having familiar items, doing familiar things with her) will help. It may not be helpful to take her out to your home or her old home or places like that for a while, as this may reintroduce the unsettled feeling. Love and patience. And hopefully, some a switched on care team. If you feel the car home lacks dementia knowledge, you can ask Dementia Support Australia to review your mum’s situation (at no cost) and they will support the care home and yourselves with strategies based on knowing who your mum is and her specific needs.

  11. My Husband has been in aged care for nigh on 2yrs, the first 6 to 8 months are horrible, I questioned every day, if I could manage at home, every time the ans was “NO you can’t “. I had to accept my decisions and he is now settled in and very involved in the activities.
    He is, like your Mum, in care, so he can live safely & be looked after by Staff who are trained in that area.
    My Hubby, was not really expected to survive, but being in care his life is more meaningful, this also could happen with your Mum.
    Good luck, believe in yourself, and accept that you are not able to keep her safe.
    Most of all, be kind on yourself.

    D

  12. Give you and your mum time to transion from being your mum’s carer to be being her daughter again.
    Your mum will settle and if you ask staff how long does it take your mum to settle after you have left you will probably find that your mum settles quickly.
    It is hard to relinquish care to somebody else.
    Have faith and trust in those fabulous nurse’s caring for your mum.
    Recently retired aged care nurse

  13. I totally understand your concerns. We recently had to move my Dad to Aged Care post leg amputation. He was very independent and with it mentally prior but now needs help. He was a person who insisted he would never leave his home until he died. We thought this would be the hardest thing for him to adapt to but he actually loves it. He has wonderful staff assistance and made friends and has activities every day. Prior to this he was home doing very little waiting for us to visit.
    So I think persist with it as your Mum at least is in a safe place. She is eligible for 63 days respite so use them if the facility is not quite her fit, try another. I visited about 10 and shortlisted 3 then chose the one I thought suited him best.
    The locked unit may not be the best option for her and there are others like where my Dad is that don’t have a locked up unit. Try before you commit and take tours or turn up and see if they can take you around. See what the residents look like do they seem happy and the staff as well.
    Wishing you the best of luck x

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