Caring for Mum when the tables turn

Annabelle Carter Short shares lessons learnt while caring for her mother, who has dementia.

Caring for Mum when the tables turn

Annabelle Carter Short has been the primary caregiver for her mother, who has was diagnosed with dementia, five years ago. She describes her experience and what she has learnt on the journey so far.

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Today, on Mother’s Day, my family will have a small gathering at home. My father passed away in 2014 after a stroke and my mother has been living with me since then. She is 82 and has dementia.

Going out to eat can be stressful and overwhelming for her, so we’ll stay home. I'll make some of her favourite dishes. She is my cooking inspiration. She was always in the kitchen. Cooking has been always an engaging and stimulating activity for her, so I'll involve her in some activities.

Mum did a lot for me growing up. She was probably my biggest confidante and she guided me through everything life threw at me. She was there through heartbreaks, graduations and, of course, when her grandchildren were born.

As she got older, though, the tables started to turn. She needed more help and when she was diagnosed with dementia, I knew I needed to be her caregiver.

How it started
Dementia isn’t something that happens overnight. I lived rather close to Mum, so I visited her often. Eventually, I started noticing odd things. For instance, she’d have trouble remembering how to make meals that she’d made since I was a kid. I noticed that she’d lose track of our conversations. One night, during a family dinner, she couldn’t recall my husband’s name.

At this point, my husband and I were getting concerned. We managed to convince her to make a doctor’s appointment to work out what was going on. That’s when we got the news – Mum had dementia.

On hearing this, we were quick to help her move in with us and I took over the primary caregiving. To help your own ageing family members in this situation, I suggest you learn some of the warning signs of dementia so you can catch it as early as possible.

Don’t take it personally
There are certain behaviours that new caregivers should be aware of. Individuals with dementia tend to have mood swings. They can sometimes act aggressively.

As someone who had always been so close to her mother, the first time I was on the receiving end of a harsh comment, I was shocked. What I had to come to terms with rather quickly was that these comments weren’t sentiments from Mum. Instead, I had to accept that this was the disease and that it was another thing to take in my stride.

Take advantage of the available resources
One thing that I cannot stress enough is that no one can take over caregiving activities completely and on their own. To do the right thing as a caregiver, you’re going to need to know how to take advantage of the resources that are at your disposal.

A support system
As much as I would like to think otherwise, I can’t take care of Mum on my own. It’s physically impossible for me to be with her 24 hours a day, seven days a week.

This is where my support system comes into play. When I need a break or time to rest, I know I can lean on my husband, my brother or even my kids. All of us are on the same page and are aware of what Mum needs.

A support system also helps me emotionally. Not much can prepare you for watching a parent lose his or her independence. I don’t think I could have been quite as successful in flipping roles with my mother without having someone there to help me through the process.

For anyone without family support, occasional respite care might be an option.

Technology
As I said, I can’t be by Mum’s side at all hours of the day. One morning, I was terrified to find that she’d left the house without any of us noticing. Luckily, a neighbour who was aware of the situation quickly called us to say Mum was walking around the neighbourhood on her own.

This led me to search for something that would help in case a similar situation in the future occurred.

The best answer was a medical alert system that could be worn on the body. In my case, I bought a medical alert that hangs around the neck, so that if Mum was hurt or lost, she could call for help with the press of a button. Since she has never been tech savvy, it was vital that it was easy to use. I would also urge you to select a device with a GPS tracker so that if a loved one gets lost, but does not press the button, you can still find her or him.

Communicating with Mum
As things progressed, I realised that the way I communicated with Mum was changing. It was easy for her to lose the thread of a conversation. I want to share with you some tips for communicating with someone who has dementia.

First, make sure there are no other distractions. For example, if the TV is on while we talk, Mum is more likely to have a hard time focusing. I also learnt that simplicity is key. If I ask her long, winding questions, she struggles to answer. On the other hand, if I ask a simple question with limited options, she finds it easier to answer.

Asking a question such as “What do you want for dinner?” may also be a little overwhelming. Instead, I usually phrase it in a simpler way: “Hey, Mum, do you want X or Y for dinner tonight?”

I also learnt patience in communicating. It may take Mum some time to answer or continue the conversation, and that’s okay.

I try to keep Mum in the loop on what we’re doing day-to-day. When doing this, I don’t throw too much at her at once. I give her a simple breakdown and, when it’s needed, I fill her in again as the day goes on.

Recognise the change in the relationship
If there’s one final thing to leave you with, it’s this: your relationship will change. But it isn’t over. Even after a dementia diagnosis, even after you become your parent’s caregiver, there are still more memories to be made. While I still wish that Mum didn’t have to face this hardship, I value the mornings that we can still laugh together on the front porch.

Taking over as Mum’s caregiver was a big change in my life and there are days when it seems overwhelming. Overall, though, I wouldn’t go back and change my decision to do so. Just as Mum helped me through my life, I’m glad that I can be here for her in her time of need.

Annabelle Carter Short was born and raised in the United States and is a professional seamstress living in Perth.

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    COMMENTS

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    Rosret
    12th May 2019
    9:15am
    :)
    grumpyoldwoman
    12th May 2019
    11:17am
    My husband has dementia and loves walking his dog everyday, now he has an alert button with GPS he walks further confident if he loses his way or something worse there will be help at hand. His GPS alert has a speaker on it and when he presses the button some one will speak to him within 5 secs and he can speak to them. It is a big relief knowing that that extra help is there and he does not need me to come with him ....unless he wants me too :) The cost is well worth the money when it gives my husband the confidence to leave the home by himself.
    fishy
    12th May 2019
    6:55pm
    wow I can tick all the boxes above with my mum I gave up work to care for mum but the part that really is pissing me off is getting help First they have to be accessed and this can take 12 months you send paper work away and hear nothing I reckon by the time I get a hand mum will be 6ft under and its just not me my wife also looks after her parents one is just about blind and the other is disabled yet she to is given the run around with getting help
    Nan Norma
    12th May 2019
    7:57pm
    For me its my husband. Whereas before there were two of us living together in our house I feel it is now me and this other person. I can't have any real conversation anymore because often after a few minutes talking I realise he's completely lost the plot.
    He asks me the same question over and over again. He'll complain that our daughter hasn't been to visit, having forgotten she lives an hour and a half drive away and was here only a few days ago. Sometimes he shocks me with a rude remark thrown at the TV as he has always been a reserved sort of person. He 'loses' things all the time, and blames me, which are usually exactly where they always are.
    My children constantly give me advice as to what I should be doing, but none of them live with us. One son is in complete denial of the situation.
    As I'm not in good health myself I am struggling. Many carers will understand me when I say
    i feel forgotten when the medical staff are all there to advice what I need to do for him but don't seem to consider my needs.
    Jenny
    12th May 2019
    11:17pm
    I understand completely, being in the same boat. My husband is completely dependant on me, on top of which I am responsible for all household decisions, home and garden maintenance, financial matters , cooking and cleaning. In short, everything. He retired early, and allowed the relationship with workmates to lapse, He had little contact with his siblings, so doesn't see them. He has become completely isolated socially, and therefore I am isolated too, since he cannot be left alone for any length of time. Our adult children visit, and have been very supportive, but they have their own lives and families and shouldn't be expected to take responsibility for a father who didn't treat them very well when they were growing up. I have applied for a government care package to get some help, but I'm obviously going to have to wait for at least 12 months, probably more. I keep wondering, which of us is going to die first, and have reached a point when I don't really care if it turns out to be me.
    Nan Norma
    13th May 2019
    10:23am
    Jenny, reading your words I think we could have the same husband. My husband has no siblings left and no friends to visit him as, like your husband, he cut himself off years ago.
    Rachar
    13th May 2019
    8:43am
    Reading the comments I can relate and I’m hearing you. My dad, aged 92, passed just 6 weeks ago. My mum, aged 88, and who has been very dependent on dad most of her life found the roles reversed. Not only did dad have the beginnings of dementia (Alzheimers) but 12 months previous he had heart failure and as a consequence his physical health was declining. He was a man who was independent, drove his car locally, kept on top of his finances etc. mum and dad did EVERYTHING together. At the time of dad’s heart failure I was beginning the long trail ahead of PAPERWORK to get some home help through government assistance. Not an easy road I can tell you! My sister and I worked in together to help mum & dad through this journey. It seemed we would just complete one step and dad’s health would decline and we had to move onto the next one and so it went on for the next 16 months. What is so bloody sad with many in my generation (baby boomers) is that so many many of us still have to work (I am 62 and cannot retire until I am 67). Also many of us grandmothers are involved with the care of our grandchildren as our daughters have had to return to work.(my daughter would love be to be a stay at home mum but just can’t afford to) I’m a disability support worker so I work at night, care for my grandchildren a few days a week and spend as much time with my heart broken mum as I possibly canwho chose to move into an aged care home. Her and dad lived together for 3 months in aged care as living at home became too difficult. My dad was having falls (he used a walker but would sometimes forget to use it) The hardest thing for me was that I had to assist my dad to go to the toilet. I thought he would feel so degraded but he took it in his stride and I did this as respectfully as I could. One important thing I have learned from this journey is that if moving a loved one into aged care home is that you seek the help of a financial advisor specialising in aged care. (They will even do all the day verwhelming paperwork for you)There are so many things I didn’t know the biggest one NEVER MOVE A COUPLE IN ON THE SAME DAY! (Just 24 hours apart can save thousands of their money) I pray that my mum ( aged 89 in a few months) passes as she doesn’t want to be here anymore. She and dad were together for 72 years. If I could give her a pill and put her to bed I would!! I pray that her broken heart allows her to leave this life.
    Nan Norma
    13th May 2019
    10:36am
    Rachar. I waited a year. The home package is not as good as you might expect. I've had four different helpers sent to me in six weeks. I had to report one.. They all want to do quick job and get out as soon as possible. The government is providing money for home packages but the scheme is only as good as these women doing the job they're supposed to be doing. From my brief experience some need some training before they are let lose. .


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