The last few blogs have been a little bleak to say the least! Today I wanted to post something a little fresher, maybe a recipe that might bake a little optimism into your life or inject a bit of hope in what seems a hopeless situation. Some practical suggestions and hopefully solutions.
**Disclaimer: Please discuss any of these solutions with an Occupational Therapist or medical professional involved in your case first, to ensure there is no risk of harm to you. Every individual will have different needs and have different risks**
One of the most common sentences said to me or my family is “how do you cope?” Or “I don’t know if I could do it”.
Well the thing is with a lot of these diseases is that choice is taken off you. How can we not cope? What choice is there? For starters, Mum has the most difficult battle of all of us, and she can’t quit. Even if she wanted to, the lack of assisted dying in the UK means she would have to go to Dignitas, and that would just be too difficult now.
And us? Well, sure we’ve considered a nursing home and had it suggested several times, but it’s hard to find one locally that caters for Mum’s complex needs, that’s local enough for us to visit daily too. Also, the impact itself could cause such a decline for her, as she is so anxious and scared. We want her at home for as long as we can. I think people are perhaps a little naive if they think it’s much easier when someone’s in a nursing home.
The pangs of pain, the grief, the guilt, the loneliness, I am sure it’s all still there whether the loved one is at home or in a care home. You might argue that they then have “freedom” at home. Well yes, they’re not tied down by a care routine, or bound to the house, but it can be a lonely time, and a big hole to fill when someone goes into care. The responsibility is never truly gone, as any complications or issues, you’re straight on the phone to sort them. Of course, there are lovely cases where people find a fantastic care facility and regain their old life back. However, I have to say from experience, it’s rare.
There is no easy path to choose. As I always like to say, I just pull up my big girls’ pants (quite literally) and focus on each day as it comes. We celebrate the little victories, and dig deep for the harder days.
So how do we Cope? Some perfectionists will have already looked at the title and gone “well it should be “A O K A”, but let’s face it, it doesn’t sound as good! “Kick ass” is probably one of my Dad’s most over said phrases. In fact, it’s “Kick Ass Take Names”, or “KATN” as he likes to abbreviate. So it only felt right to include it!
It’s safe to say we’ve had one of our most challenging “dips” in Mum’s condition recently. For those who don’t follow me much, she has Huntington’s Disease (HD). We seemed to have very little good days over the summer, and it was emotionally and physically exhausting.
The thing with HD is it can be pretty horrendous from start to finish in terms of challenges, as each stage brings a different challenge (and it’s long road, a marathon). The early stages were challenging as Mum was still very mobile, independent, and cognitively quite well. But her mental health, and mild cognitive impairment placed her with a certain element of risk that she was unable to recognise, and her moods were unpredictable, which was always hard especially in public places. However, we now face different challenges that we have to find solutions for.
The easiest way for me to do this without getting timelines mixed up, is to just list tips and tricks we have done, at different stages to solve problems. I will include photos and links where possible to equipment / gadgets.
Having a young child and caring for Mum came with its challenges once Rosa was too big for a baby carrier. I couldn’t take a buggy and a wheelchair, and Rosa was toddling, which as you will know with children, they don’t always walk at your pace. I tried toddler reigns but again this was with difficulty trying to steer both Rosa and Mum one handed
I decided to try a buggy board – I measured the distance between Mum’s wheelchair bars, and then looked online at measurements for different buggy boards. I found the one I thought would fit, and bought it second hand online! It worked a TREAT. It still works great and Rosa is 4! It became a real adventure getting on ‘Nanny’s train’. See pictures 2 and 3 for guidance.
Slipping, spillages, feed sliding. DYCEM! Dycem is a solution for
SO many things. I absolutely love the stuff! Best of all it is actually pretty cheap to buy, and like most things can be bought on Amazon from as little as £15 a roll. You can buy it in a roll and cut it to your needs, or you can buy little mats for bowls, china, food trays etc. We have use it as Mum’s ataxia means she tips / slips a lot of items over. We use it for cups, food bowls, foot plate on the shower chair to stop her feet sliding off, the toilet seat lid to stop her sliding off when it is down. It really is a useful tool to have in the house with any disability!
Mum is taking longer and longer to eat now and her meals were getting cold before she had finished them. We can’t rush the process, as it is so difficult for her to concentrate on the task of eating. She is high risk of choking, and already on a puree diet. A carer of ours had this brilliant idea of thermal bowls! They are fantastic. Mum’s food now stays (and the same consistency for swallowing) warm for the whole meal, making it far more enjoyable for her. You may say “just whack it in the microwave”, but this was disruptive to Mum’s eating, and you also then tend to overheat it. With Huntington’s Disease, there is an inability to wait, especially when it comes to food. The thermal bowls have been perfect. You simply add boiling water to the compartment beneath the ceramic bowl and VOILA! They’re £15 on the website below.
Stairs, and falling down them! This is one of my favourite adaptations, as it relieved so much anxiety for so long. Before Mum had a bedroom downstairs, she had to walk past the top of the stairs to get to the bathroom. This was so nerve racking for us, as she would sway side to side, like on a ship, as she walked past the top of the stairs. I cannot count on two hands how many times I have caught Mum at that point from toppling down the stairs. Yes, we had a grab rail and bannister along the wall, but Mum could not risk assess and never held it. If she did hold it, it would be held softly, and she didn’t have the fine motor skills nor reactions to grab it firmly if she tipped.
This, along with her getting up in the night occasionally, caused a lot of worry. We couldn’t fit a stair lift, as her ataxia was so strong, the Occupational Therapists, and us, had concern she would just all over it, or be at risk of falling down the stairs trying to get on it. At this point Mum’s cognitive impairment was becoming more pronounced, and we just weren’t happy with her operating it on her own. The conventional stair gates posed a hazard, not only a trip hazard with the bottom bar, but also the risk of her again toppling over that and down the stair.
So our solution was to get a carpenter to build our stair gate my dad designed. It was waist height, attached to the stairs with four latches (two each side). This eliminated the risk of a tumble down, but also gave us time and warning to get there if we heard the latches being undone. (If you have HD in the family, you’ll know that they can’t do any task quietly due to the lack of motor control, so we had plenty of warning!) This also made us sleep a lot better at night. The PDF design written up by my Dad can be emailed to you if this is too small, so do request one via email if interested. (Dog in photo NOT included...)
Sleeping... Sleep quality was poor for us, knowing Mum could get up in the night and not assess the risk to herself. What is we didn't hear her? We found it far more reassuring if we knew we could look at Mum if we woke up in the night worried, we had heard something. Our friend Ross came up with the idea of using a baby monitor. Mum enjoyed being able to communicate through the monitor too – so we made sure we got one with the capability of being able to talk into the monitor. It meant we could see if she was in bed, if she had got up, and we could talk through it say “Are you ok Jen?” or “Hold on Mum, don’t go by yourself, I am on my way”. Of course consent it very important with a camera. It doesn't need to be a posh or expensive one, just needs the ability to video and talk through to the receiver. We have a Motorola one which is on the link below, it was pricey but we use it so much we thought it was worth the money.
Seating! Before we got a specialist recliner for Mum, we had a continual problem with her involuntary movements making her slip forwards out of any chair. For a long time, she would not even agree to a wheelchair, let alone a bespoke recliner, so we had to make sly changes where we could. We bought very cheap foam wedges online from Amazon (NB: Some Occupational Therapy departments will supply these for you for free!). We put them underneath the cushion, and also on the sides to pack her in, and to lift the front of her legs slightly, making it more difficult for her to push herself off the chair. To hide the wedges, we would use blankets tucked over them. There are several on amazon but the link shows an example.
Bathroom bruises and broken toilet seats… Now this one is our proudest of adaptations! Many people whose loved one has ataxia or Parkinson’s may also relate, but if your loved one or yourself has HD, you’ll understand! This photo below is a back rest, which protrudes out of the wall. This means, that when Mum sits down, the back of her shoulders hit into the back rest, not hard tiles, not her head on the tiles, and she is unharmed near enough 100% of the time. It has saved us money on toilet seats as it takes some of the force off the toilet seat by taking some of the impact on the way down. There is a detailed PDF written by my Dad about designing it. If you show it to a handy man/woman or Occupational Therapist they may be able to assist you in making it! Email me for a copy of the PDF.
Spillages and choking… how do you find the right cup for you? With HD, it is difficult for someone to have the control and coordination to tip their head back and the cup. One cup we found brilliant was the handicups – slanted beakers. The other beaker lids had huge spouts and the liquid came out too fast for us. The holes on these beakers are smaller, so much easier to control the flow of liquid dependent on how much (if any) thickener is used. The problem with the design? The lids are pop on, not screw on.
We had so many times where clothes were fully covered in cups of tea – not only is this frustrating but also a burns risk. Our easy fix? We use elastic bands to go around the base of the cup, then up over the front of the beaker. The tension with 3-4 bands on was enough to keep the lid secure! This has meant Mum has kept some independence for longer and been able to drink by herself with minimal help. My dad is now going to drill/re size the lid hole so it’s’ perfect for Mum’s needs as they change. Handicups can be purchased on several different websites but Amazon do sell them (see link).
'Nose cut out cups' are also really helpful in particular in HD, before you get to the stage of needing a lid. See picture number 3 for what these are.
Before Mum was wheelchair bound, she was in a ‘normal’ high street brand bed, as opposed to a hospital bed. She would be able to get herself up and walk to the bathroom. Now, this was never recommended, as she was so off balance and unsteady it regularly turned into a fall. However, being HD, she was stubborn and could not assess risks, so she would get up in the night and hurry to the toilet, as she was anxious about incontinence.
This became a real risk for us in the night, as we were asleep, and we couldn’t have quick enough reactions to help her in time. We decided to purchase a wooden toddler bed guard. This meant that she was safe from falling out of the bed, she had something to help her steady herself and sit up, but it didn’t pose a risk. We used a white wooden one, but any will do that suits your taste! It also follows onto my next point… Read on to cat bells!
Not hearing Mum get up quick enough… Cat bells! No I am not a crazy cat lady
(I am actually a crazy dog lady…). We found that even with a video monitor, we
weren’t sleeping well. We had more incidents where we weren’t quick enough to
wake up to Mum’s voice, as her tone was so quiet. The telecare we had was
amazing, a pager that beeped and vibrated if Mum left the bed, but she was
still very fast. By the time that went off she was halfway to the bathroom. So,
we had the idea of having something noisy tied to the bed guard to alert us
when she is restless or moving. Cat bells! Cheap, easy to locate and easy to
tie on the bed guard with cable ties or string.