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Huntington's Disease Youth Organization

Visiting a care home

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As Huntington’s disease progresses, people tend to need more care. This can be an incredibly difficult task for someone to undertake, as the kind of care needed can become an exhausting 24 hours a day, 7 days a week job. This is why many people with Huntington’s disease eventually live in a care home, a place where they can receive care around the clock and have their needs met by professionals. This section highlights some of the emotional difficulties experienced by young people who have a parent with Huntington’s disease in a care home, and some tips on how to make the most out of this situation.

Making the decision that a care home is necessary

Coming to the realisation that the person with Huntington’s disease may need to move into a care home, in order to get the support they need, can be one of the most heart-wrenching moments for a family to have to experience.

‘My mom went into a care home when she was 46 years old. I remember this being one of the hardest decisions our family had to make. I wanted to look after my mom, as I really felt a nursing home was not the right place for her, but eventually I had to agree to her going into the nursing home. My family all struggled a lot with this decision and I remember there being a lot of hurt, worry and fear around this huge step.’ Milly

It’s important to remember that not every person with Huntington’s disease goes into a care home, but due to the complexity of the illness people may eventually need more care than can be provided at home. For those that do decide a care home is necessary, there can initially be a sense of guilt and an urge to want to keep the person at home with their family. This makes the decision over a care home incredibly difficult emotionally for everybody involved, including the young person. But care homes are there to support and provide care, and most do a great job.

‘Emotionally, it was difficult. Although we visited her at least once a week, it was hard seeing my mum there, as from my point of view this was not her actual home. The care home was not her living with us and I saw it as if she was alone, without her family. However after a few months, it became easier. I realised that she needed this full-time care, so this was the best place for Mum.’ Lucy

Care homes can also take a huge amount of stress off the family. Caring for someone with Huntington’s disease takes an awful lot of time and effort. Families may have previously been providing the care for their loved one at a cost to their own careers, social lives and well-being.

Finding a suitable care home

Once a decision has been made that a care home is necessary, the next step is to find one suitable for the person with Huntington’s disease and the family. This is not always very easy, as ideally it would be best to be able to select a care home that specialises in Huntington’s disease. But often there are not many specialist care homes around, and those that are may not be close to where the family lives, which would make visiting difficult.

The financial costs of the care home need to be taken into account also. Care can be quite expensive in many regions of the world, with financial support varying depending on your situation. Sometimes this can have an impact on what care home you are able to choose, meaning you may not get the one you wanted. Usually a lot of searching has to be done in order to find the most suitable care home for each family’s/person’s situation. Your national Huntington’s Disease Association may be able to help you find the right care home in your area.

Decorating a care home room

‘Finding a care home suitable is the first, but one of the most important steps. It took us 8 months to find the right care home, but after we had selected it, we knew it was the right choice. We built connections with a few of the key nurses that would be caring for Mum, so we had that trust that was much needed in them.’ Lucy

Making it like home

Once a care home has been selected and the move is done, it can be a great idea to make the person’s new surroundings feel like home.

‘The first few visits I helped in making her new room feel like home, pasting the walls in photos of my brother, myself, my father and my mom.’ Ryan

Putting some familiar faces on the walls and perhaps some much loved items in the room can really help make the place feel like home for the person with Huntington’s disease, and they may in turn feel more relaxed about being there after their move.

Visiting a care home

Visiting a loved one in a care home can sometimes be challenging, both practically and emotionally, for a young person in a family with Huntington’s disease.

Having to travel long distances

As was mentioned before, the care home that was decided on being the most suitable for the person with Huntington’s disease may not be located near where the bulk of the family lives, making it hard to visit regularly.

‘Mum’s care home was a round trip of 3 hours - an hour and a half to get there and the same back. Which was difficult as it was hard knowing that she wasn’t local, so I knew that I couldn’t see her if I wanted to on a whim, and up until a year ago I could not drive, so could never go as and when I wanted, which was hard in itself.’ Jess

A long trip to the care home can be very tiring for a young person and because of that it can be hard to then find the energy to enjoy quality time with the person staying at the care home. Plus, as young people grow up and their schedules may become more packed, it can be even more difficult to find the time to visit the care home.

‘As I reached 16, I got a Saturday job and had college in the week; it was a bigger struggle visiting my Mum as she was so far away. We contemplated moving her to a home more local, but she was settled in her care home.’ Jess

Sometimes it can be useful to plan ahead in advance a trip to the care home, and to make a day trip out of it. This can help make sure that the time being spent with the person at the care home is quality time.

‘We would visit for whole days, staying in the care home until lunch, watching morning TV then taking her out in the afternoon, before bringing her back to the care home. We would stay for dinner, and then it would be time to say goodbye to mum, give her a kiss and tell her that we would see her next week.’ Trish

Communication

As people progress with Huntington’s disease, talking and communicating in general can become very difficult. A person’s speech tends to gradually fade away until they are unable to communicate at all. This doesn’t happen to everybody who has Huntington’s disease, but many do experience it. And for young people it can be really tough not being able to talk with your loved one when they do go to visit, especially if you can’t visit as often as you’d like.

‘It’s extremely hard not being able to communicate with my mum. We knew my mum could hear us, but could not communicate back, so we would simply talk to her. I hoped that she would understand what we were saying, remember who we were and have all the good memories still in her mind, but we could never tell as she could not communicate back.’ Rob

It is important to remember that, just because the person with Huntington’s disease can’t talk, it does not mean they can’t hear or understand you. If you speak to the person with the condition they will understand what you are saying. So make sure you keep on talking to your family member who has Huntington’s disease and tell them all the latest stories from your life so they can share in what you have been up to. Keep communicating with your family member, even when they are unable to talk back. You never know, you might say something that generates a smile!

Making difficult decisions

There is always somebody responsible for making the decisions regarding a loved one’s care plan and sometimes this responsibility falls on a young person from a family affected by Huntington’s disease. Making the decision that a care home is necessary is one thing, but planning for late stage decisions, like feeding tubes or what to do if the person gets an infection, is incredibly emotional and can be quite distressing. It can be useful to discuss late stage plans with the person who has Huntington’s disease well before they are unable to make decisions for themselves. However, this can’t always be done and if you do end up having to make these difficult decisions then you can only do what you and the rest of the family feel is right. You might feel you’re making the wrong decisions, but just think how much harder things would be for your loved one if you weren’t there at all to help. Again, if you find yourself in this situation, the HDYO Forum may be able to provide you some advice and support. But, again, you should find professional support with these decisions from your national Huntington’s Disease Association.

Witnessing the deterioration

One of the hardest parts of growing up with a loved one diagnosed with Huntington’s disease is witnessing the deterioration, and there is not much difference whether that deterioration is happening in the care home or in the family home - the impact is huge.

‘My mum is an incredibly strong person, and seeing Huntington’s disease take over her body has affected me deeply over my teenage years. Without the support of my father and my brother, I don’t know where we would be as a family unit. My mum is a fighter, and I love the bones off her.’ Lucy

Seeing someone in a care home once every so often can make the impact of witnessing the deterioration even larger. It can also put people off visiting because they don’t want to see their loved one being ‘taken over’, as Lucy put it, by Huntington’s disease. Although this can be difficult, you have to try to be strong and remember that your loved one is still there, in that body, and they’d probably love a visit.

‘As I got older, visiting actually got harder for me personally. I grew up without my mother, and really craved the mother daughter relationship that my friends would talk about. I struggled seeing my mum being taken over by Huntington’s disease, but knew that for her sake and mine too, I would keep visiting her.’ Lucy

However, don’t feel guilty if you don’t want to visit, many young people feel the same way and it’s important to realise that it is ok not to visit. You may find that you can only visit every so often, or for a short period of time, the important thing is to do what you’re comfortable with.

BJ and his family

Talking about this issue can really help, so don’t hesitate to go to the HDYO Forum for support from other young people in the same situation.

Enjoying quality time together and having fun

After all of these difficult issues, don’t forget the main thing, which is to enjoy quality time together and have as much fun as possible on your visits!

‘It’s been hard to watch mom deteriorate in the home, but I try to make our visits fun. She loves my visits and always demands her ice cream! My kids jump on her bed, put makeup on her and make her laugh. We listen to music, dance around, and hang things on her walls or from the ceiling. We have a good laugh.’ Teresa

Planning some activities or day trips can really make a visit that little bit special. It can mean extra work and organisation to get things done, but the results can be so beneficial for everyone.

‘The activities at the nursing home are more like bowling, line dancing, bingo… all things my mom hates! But as a family we take my mom out regularly so she could still attend some of the fun things she loves doing. My brothers play in a band and we take her to their gigs, my kids played soccer on Saturdays and we would pick her up and take her to games, birthday parties etc. So eventually I came to accept that the nursing home provides the 'care’ but we provided the fun, recreation and love.‘ Teresa

How you approach a trip to the care home has a huge effect on the mood of the visit. Having a positive plan for the trip will more than likely result in a positive visit, leaving everybody with smiles on their faces. Nothing is certain of course, but you can only try your best. Here are a few ideas and tips to help.

Things to do with someone in a care home

Walking in a park

Perhaps you have other ideas of fun things to do when visiting a loved one at a care home? If you do then let us know and we will add them to the list!

Child hugging parent

Having a loved one with Huntington’s disease in a care home can be very difficult to cope with at times and presents many challenges. But there can still be a lot of good times to be had, and each visit to the care home can be made into an enjoyable, fun and positive visit for all if planned out in advance. If you have any thoughts or experiences of care homes, the HDYO Forum would be a good place to share with other young people in your situation. And if you have any questions don’t hesitate to ask HDYO directly or ask an expert in the Ask a question section.