When is the right time to move into full time care? Stage 5 has definitely started, dementia is starting to become more evident and mobility is limited. Is it best to stay at home or move into a care home for more support?
You are asking a very good question that seems so simple but unfortunately there is no easy or straightforward answer. It depends on so many variables that are unique to your particular situation. I thought it may be helpful to highlight some of the more common issues that people face and maybe you can apply some of the more relevant ones to your own circumstances. These are in no particular order, they are written just as they come to mind.
- First I want to say I’m glad you acknowledge a care home as an option. All too often people talk about ‘putting someone in a home’ and it carries negative overtones. For some people however, this can be by far the best option - the person has company, things to do and staff who can help as needed etc. There are also an increasing number of new style care homes cropping up, which are completely different to what most imagine a care home to be like, they are more like 5 star hotels so if you do consider a care home, don’t be blinkered and do your research to find out what’s out there.
- A lot depends on whether the person lives alone or with someone as the risks can be entirely different. If living alone and responsible for everything that entails the dilemma can be that you can bring in a support package to help with various things but even it they do four calls a day, that still leaves a substantial period of time when the person has to manage on their own and in particular how safe they are; if for example, dementia is developing might they leave a saucepan on the stove when cooking something and forget about it. There are ways to deal with such issues with a care package but obviously this is complex. The issues are not necessarily any easier if the person lives with someone. Whilst the sorts of issues outlined above may be less significant, carrying the carer role for an extended period of time can become very difficult - it is relentless, exhausting, and could go on for years and very often the person you end up caring for is not the person you knew. It can be a lonely life with the carer often ending up with having to make all the decisions on anything and everything that used to be shared.
- Much depends on how the Parkinson’s progresses. Some undergo quite a personality change and as the condition worsens can develop all sorts of challenging behaviours both verbal and physical. Equally the stress and pressure of caring can be huge - however patient you are being with someone who repeatedly asks the same question over and over again is both exhausting and frustrating and it is not hard to reach a point when you react to that in a negative way.
- There is a general assumption that a member of the family, often but not always, female who will take on the caring role. There is no law that says this however so no family member has to take on this role and you need to be honest with yourself as to whether you can take this on or not - or maybe can start off doing managing someone’s care needs but recognising a point further down the road where you can no longer manage this and takes steps to look at different options such as a care home.
- A live-in carer could be an option to be looked into.
- How much is the person with Parkinson’s aware or involved with discussions about their care.
- Get formal assessments. Things can be helped if there are formal diagnoses or assessments completed as this can help access to services. For example if you suspect dementia see a GP about getting this formally diagnosed. Assessments by your local authority social care team can look at the home circumstances, make recommendations for support packages including options such as day centres and so on. Carers can also have an assessment in their own right.
These are just a few things that come to mind off the top of my head, there will be others and you need to consider your own particular circumstances carefully as there is no hard and fast rule. You may find it helpful to speak to one of the advisers on on helpdesk.
Finally, do not underestimate the emotional cost when starting to make these tough decisions - guilt can play a huge part and make the decision making process 10 times harder., so be prepared for that.
I’m sorry I can’t give you a specific answer to your apparently simple questions, but I hope you can understand a bit now as to why I couldn’t do that.
I take it you are talking as a carer rather than a sufferer? There is no definitive answer to your question as much depends your personal circumstances financial situation, accommodation you are living in at present and provision locally of homecare and care homes.
A few pointers
it’s important to distinguish between care homes and nursing homes as some care homes will not take new residents with pre-existing medical conditions.
Care home residents lose a degree of autonomy as most care homes tend to have fixed routines.
Many dementia sufferers go downhill when removed from familiar surroundings where they still have visual clues to help maintain their identity.
My feeling is to stay at home for as long as possible provided there is enough homecare support.
Many care homes offer respite care and this might be a way to test how well any individual Parkinson’s sufferer might adapt to permanent residency----they might flourish------- or go downhill rapidly.
Valid points Grober and well made.
When I could no longer cope on my own after 7 years of caring I chose to engage 24-hour live-in carers because I could not contemplate arranging for my wife of 50 years to move into a care home. I use an agency that provides trained carers from Ghana and they have proved to be diligent and dedicated. I share the caring and household duties with them, treat them as part of the family and they good company for me. This has continued for the past 18 months. The cost is slightly more than for a nursing home but supports me as well as my wife.
The key thing in my opinion GordonRA, is that you were proactive recognising that your home situation was becoming untenable and seeking out a solution that was in the best interests of both you and your wife and I applaud your ĥonesty and bravery in so doing. So many delay making such decisions, often through guilt or a sense of duty, then one day the whole thing breaks down and you are dealing with a crisis situation which can be hugely upsetting and stressful for all.
Best wishes to both you and your wife.
Another option to consider is buying into a retirement complex, preferably an apartment with emergency alarm, lift access, community lounge, gardens, laundry and site manager. Or if you rent, move to council and housing association ‘sheltered housing’. The accommodation is adapted to the needs of the frail and elderly. You could still have carers come or transfer your loved one to a care home. You would have a suitable home for your old age too, and have company and activities and friends on site