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How to encourage your loved one to be independent
It’s quite common for people to think that because someone has a disability, even an invisible one like IPF, they’re unable to complete daily tasks on their own. It’s this type of thinking that cultivates dependence on others. Columnist Charlene Marshall says that by helping your loved one or friend with a task, instead of completing it for them, you are helping to foster their independence regardless of their invisible illness or their disability — and they’ll be extremely grateful.
Read more here: 4 Ways to Foster Independence When a Loved One Has a Disability
Do you struggle to let your spouse or loved one complete tasks on their own? How can you support your loved one in practicing independence?
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6 Replies
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This is a big deal for me. My spouse is 81, diagnosed in November 2016. He has never come to terms with the diagnosis, spent about 18 months being angry. On Esbriet, the first scan showed the disease was stable, the second showed ‘significant deterioration’. Even more unhappy. In the last six months, perhaps longer, I’ve observed behaviours that look like age-related dementia. His GP thinks ‘senility’. But he manages to do lots of his normal stuff, including paying bills on the telephone, etc. Then I find him standing in front of the oven saying he needs to put his dentures away for the night.
He has also (referring to the topic above) become more dependent – wanting help with choosing what to wear, including what to wear to sleep, says he doesn’t know how to use the remote to change channels; ‘what should I do next’ is a common refrain.
He is due for a gastroscopy to sort out oesophagus problems, I guess after he is through that recovery, I will have to see if his GP will get him assessed for dementia – of whichever kind.
Sad.
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Hi Vijaya,
Thank you for contributing your thoughts and experiences to this thread. It is an important one to discuss, and a big deal for many caregivers, I agree!
What a tough thing to experience for you, watching your spouse go through so many changes that are hard to identify the cause of them. Unfortunately, I have heard (although never experience myself, so this is only through others’ hear-say) that prolonged or chronic under-oxygenation can cause the brain to not think as clearly. This (under oxygenation) would certainly happen with IPF, and perhaps some of his behaviours that might mirror dementia could be caused from this? Just something to consider. Has he been assessed recently for his oxygen needs following a PFT or pulmonary assessment? Sometimes when our oxygen settings are at a certain level, but our lungs decline over time, then the amount of oxygen we require might go up but it might not be adjusted if the doctor hasn’t assessed him recently. Also just something to consider….
I am sad for you as well, and so sorry that you’re walking this road. It definitely is not fair, and this disease truly is a cruel one, not only for the patients but for their loved ones as well. Hang in there and know that we’re here for support.
Kindest regards, and wishing you and your husband well.
Charlene.
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Hello!
Sending my love to you Vijaya in this difficult time. A quick point on the above regarding the lack of oxygen bringing about dementia like symptoms, that has happened on a few occasions with my Dad. Usually in a morning when he was coming around and his oxygen levels were a bit all over the place, he would often appear confused and a little lost on what was going on. He wouldn’t usually remember these episodes, and they were short lived as I encouraged him to sit, focus on his breathing and turn his oxygen up a little until he recovered. I agree on what Charlene has suggested in monitoring oxygen levels and speaking to your HCP on this topic to ease your fears and concerns.
Regarding the topic as a whole, it is a tricky one to broach as a carer because I think it totally depends on how willing the person living with the disease wants to be at keeping fit and taking better care of themselves. Some will strive to outlive their illness by being disciplined at looking after themselves and keeping active, whereas others will feel the opposite and instead be filled with hopelessness that can bring about mental illness and ultimately debilitate them from looking after themselves. Of course this isn’t always a straight path, it will ebb and flow as the condition improves and deteriorates, perhaps day by day depending on how the individual is feeling.
My Father was mostly very willing and determined to stay active and to improve his strength. His first stay in hospital was for quite a long period of time where he lost a lot of weight and muscle mass, this wasn’t that long after his diagnosis in fact. Most of his willing was because he knew he would be a better candidate for a lung transplant by trying to show his determination. However, as carers I’m sure we can all do something to assist those living with lung disease or debilitating illness to encourage them to remain independent and as mobile as possible.
Figuring out their strengths & weaknesses.
Dad was brilliant at wanting to remain control over his oxygen so I left him to his own devices when it came to refilling his tanks or checking his supply and needing to order anymore. He would tally how many times he filled his oxygen throughout the day and keep records. Any odd jobs, bits and bobs I would get him to do, even so much that when Mum had an accident in the Land Rover, he sat outside on a little stool and figured out how to change the parts by himself (he was a mechanic so it was an easy job for him) and all I had to do was provide cups of tea. It just so happened his GP dropped round for an unexpected visit and was stunned to see how he was just plodding along as normal despite being on such a high flow of oxygen.
There were of course areas he needed some help with. Personal hygiene, getting dressed, making meals and such. I did as much as I could to keep him involved in doing this activities with me, but by breaking them down so he didn’t feel overwhelmed or rushed. In a morning I would wheel him to the bathroom, he would sit on a stool by the sink and wash himself, I always encouraged him to take his time and to enjoy the sensation of the water on his hands. Sometimes I would put a few drops of essential oils in there like lavender or eucalyptus for a bit of extra calming or invigorating. I would put his clothes in close reach and he usually was able to dress himself if he took his time. I always hovered around to check in but this was a great opportunity for me to make the bed, have a clean around the house and make his breakfast if he hadn’t yet had any. But I think it started the day well for him knowing he had had control of getting up, dressed and ready for the day as normal.
If making dinner or cooking I was happy to do this by myself as I find this quite relaxing. Instead he would read his books or I’d find a film for him to watch on the tele. Usually we would try to go for a run out each day, even if it was just a drive round and having a coffee in the car so he wouldn’t feel like he had cabin fever. There were small walks we did together as well where he was able to improve his strength so much so that he was able to carry his oxygen on his back without needing something to lean on, perhaps just his umbrella as a walking stick. Sometimes though if it had been a quieter day I would get him to help me by making his excellent scones, usually getting all the ingredients on the side so all he had to do was weigh them and mix them together up until they needed to go in the oven.
Overall most importantly I think you need patience and compassion as a carer, which can sometimes wear thin and sometimes it can feel difficult to hold onto. Personally, if you feel your loved one isn’t motivated to try then maybe trying small steps to make them feel like they have control in some areas. We have to remember how hard it must be for someone to feel so vulnerable, and for my Dad he always talked about his feelings of guilt and being a burden which discouraged him from trying on some days. These feelings can come out in sadness, but of course misdirected anger as well.
If the situation is continuing without much change, then I would encourage finding someone to talk to so you can express your emotions away from your loved one and be able to return with a much clearer frame of mind. Looking into accessing mental health services is absolutely vital for the both of you as well since the psychological toll of illness can be absolutely devastating on relationships and mood. Write a journal, or find similar positive outlets to express your own feelings and don’t feel you always have to be strong. It is important to acknowledge your own feelings of fear, sorrow or anger so it doesn’t build inside and encourage negative situations.
Caring is all trial and error, and it is never a straight path. We all find areas that work for us, and we will all approach it differently. What I would say is important is encouraging them to remain independent, doing what you feel is best at involving them in doing activities together but likewise being patient that it can take time. Be mindful of how it can change day by day, and try to remain a positive aura as that will hopefully feed them into knowing their is life ahead and memories still to be made. I know it’s all easy sitting and reading this, but difficult to act it out. Just remember to take care of yourself, seek guidance and support from someone you trust and be sure to communicate with your loved one so you can both understand your feelings and fears, but also figure out what you can do to help each other out.
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Hello Kate, you are such a compassionate person. You were a blessing to your dad and I am sure he appreciated you. You make such good points and suggestions in your post. You remind me so much of my wife. She did many of the things you have mentioned in your post. I love to cook; she got me a stool chair so I could wheel around the kitchen. I had to be careful not to ignite my oxygen tank. She would set things up to make my life easier but I still felt like I was a part of the team. I did most of my activity sitting down but I was doing something. I think it’s important for the patient to feel not forgotten. Thank you Kate I am sure the forum members will appreciate your post. Mark
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Hello Mark, thank you for your very kind response. It’s always nice to feel part of a team, especially when you might feel isolated in your illness or isolated as a Carer. I think relationships can easily become very strained if there is no communication, but people also solely label themselves as patient and carer and forget what life was like before. We want to be independent so it’s hard to put that responsibility of your health on someone else’ shoulders, but at the end of the day, it can also be a cathartic experience of learning more about someone which is how it was for me and Dad. We were close before his illness, but I learned so many new and wonderful things about him as his Carer so I will always be grateful for having had that time with him. It has certainly helped in my grief knowing I was fortunate to be close with him and to spend time with him whereas my other siblings and Mother had to work and therefore probably sometimes feel they lost out a lot in his final years. It’s an uneven rocky road, but like all aspects of life if you figure out how to make yourself happy, it will be infectious to those around you.
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Very well said Kate!
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