Aging in place may be more like imprisonment than independence for "elder orphans,"

[gleeson]

"Elder orphans" is a new buzzword in current writings about aging. It describes seniors who are single or widowed; they have no children, at least in the area; and no support system. This group will continue to grow as baby boomers, who are more likely to meet this definition, age and life expectancy continues to lengthen.

Aging in place can be dangerous for this group. The risks they face are detailed in a new study I reviewed in a recent blog post. See bit.ly/1IjRU90

[bigmama53]

I run a support group for people with Parkinson's and as a result of recognising the needs of the group, which is made up of people with P and their partners/carers, I formed three sub-groups. One was for the carers, giving them a platform to discuss their fears and concerns and solutions and to have their own support system. Similarly I formed another one for those who have P and live alone. Again to provide them with a support system and to give them confidence that they're not alone. The third was a choir to help people with voice difficulties which also helped form friendships and which also gave people 'the feel good' factor.

I think the important thing for all these groups is to stay active and in touch with friends. Make use of the many organisations set up for this very purpose and also take the initiative to find out about them and even have a trial membership whilst finding out if they suit you and vice versa.

[MadgeB in reply to bigmama53]

I am secretary of a very active support group. I have considered a carers group but wonder how to deal with the person they care for while they meet. Do you have premises where the sub groups can meet separately on the same day, same time? Do volunteers without PD get involved with the groups of carers and the PD sufferers living alone or are they left to their own devices?

We have monthly meetings and had singing and dancing sessions which involve everyone, with time for tea and chat. We also been having a regular Pilates session for a small group of our members with or without PD.

[bigmama53 in reply to MadgeB]

Hi Madge, those with PD who cannot be left alone whilst their carer needs to be away for short or long spells, arrangements are made for other family members, friends or care professionals to look after them. The carers group meet in each others' homes. They also arrange events for their own group, eg yoga, pilates, dinner, walks on top of their regular meetings where they also organise for speakers to attend. The Singletons group also do the same. An agenda is set for each meeting but it doesn't always have to be a formal meeting. Just a social evening is also vey beneficial. Hope this helps.

[gleeson in reply to bigmama53]

This is great!

[soup in reply to bigmama53]

On our group's mailing list of 400 people we see about 90 people regularly Across the three meeting held venues each month. Where are the others?

Statistically our mailing list only holds about a third of all people with Parkinson's on our 'patch'. Where are the others?

Our group covers 400 square miles of a rural county in the UK which is also a peninsula so we know they are not finding support outside the county.

Meetings only help those who go to them.

The social isolation which comes with location, age, bereavement, and long term chronic health problems cannot be underestimated.

As the Internet using generations age they will find support where they can but it is not easy for those who have not had that experience.

We run our carers' group at the same venue in parallel to an activity for the people with the diagnosis.

[racerCP]

Whenever I hear discussions about the trevails of aging I think how lucky I am to live to almost 75 when so many people didn't make it. I hope to 'age in place' and experience the problems of an 80 year old and maybe beyond. I have been DX'd with PD in 2012 and am grateful for my life and ability to make the best of whatever I have.

[MadgeB]

Thank you for your reply. I think this works if you have people who are prepared to do the organising. Unfortunately with an elderly and unwell group most of them are happy to let someone like me organise a once a month meeting/speaker and just turn up without any responsibility.

[wifeofparky]

Aging in place successfully requires advance planning and realistic goals. Just saying you want to stay at home till you die is not realistic planning. You need to envision the worst case scenarios and determine if staying in your present home is feasible and safe. When my husband was diagnosed we knew that we could not stay in our tri-level home for much longer. We built a handicapped accessible ranch style home where I as an RN would be able to meet his changing needs with little assistance from our children and agencies. We knew we would have to accept help if my health status changed. It was not cheap but now that my husband is gone, I have a safe place to live without fear of falling down stairs and being alone.

I also facilitate a Caregivers Support Group and most people refuse to accept change and by the time they do it is usually too little too late.

[gleeson in reply to wifeofparky]

If it's OK by you, I'd like to copy this and add it as a comment to my original blog post.

[wifeofparky in reply to gleeson]

go right ahead.

[fwes]

Gleeson, Thank you for your invigorating and interesting post.An important point to note is that it is often the caregiver and not the PD patient that is left holding the short straw. As a person without spouse, the caregiver is the one that is likely to become the elder orphan. In our support group we have had a series of discussions on "caring for the caregiver".

Two major themes have arisen: 1. It is especially important that the caregiver have disability and long-term care insurance. 2. It is tempting for the caregiver to withdraw socially and to lose their support group of friends; it is important that they arrange time and ways for the caregiver to maintain an active social life and have a "friends" support group in place for them when the time arises.

We PD patients must be very sensitive to this issue, and unselfish in our assisting in making this kind of time available for our caregiver. They care for us in love; this is a way that we can care for them in love.

[gleeson]

Thanks Fewes. A cogent and helpful message, as usual.