Marlyn and her husband designed their home to meet their future needs. She is amazed, however, to see how many things could have been better adapted to her husband's disability.

Written testimony

Well, if you’re living with somebody with a disease that you know is going to get worse, it’s really important to try and talk to people who are already at that point and get a sense of what needs you’re going to have to meet. We tried to design this place with everything in mind for the future, but it’s amazing how many things are still a problem—that if he had been where he’s at now when we were designing the place, we would have designed differently. And that was even with designing, working with an accessibility design consultant too, who brought all sorts of things into it that we wouldn’t have thought of.

So if you are making any kind of changes like moving to a different place or, or whatever, try and speak to somebody who’s in—and I think it’s incumbent on the caregiving person to do this—to speak to somebody who’s in an advanced stage and their caregiver to try and get that kind of information. Because I know my husband was eternally optimistic, and even though I could project the needs for certain things in the future when he got worse, he would say “Oh no, no we won’t need that.” Well anything I projected certainly came to be true, and there were things I didn’t project. […] It’s too bad, if you’re going to the trouble of buying a place to meet the needs, or renovating, or building, to then 10 years into it later you’re suddenly thinking, “Oh, there’s all sorts of different things we should have done differently.”

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More content

• Effects of care recipients’ behaviour -Marlyn
  Maryln noticed that care recipients can get caught up in their own needs and not see the impact they have on the people around them.
• Providing Support – Marlyn
  Marlyn had to find a balance between the physical care her husband required and her own limits in performing these kinds of tasks.
• Resources – Marlyn
  Marlyn strongly suggest that caregivers join a support group: you will find people who understand how you feel.
• Interaction with professionals – Marlyn
  When her doctor told her she needed to start taking holidays, Marlyn found it much easier to take regular respite.
• Home care and live-in caregivers – Marlyn (sound)
  Overall Marlyn has good experiences with the people that come to her home to care for her husband.
• Home care and live-in caregivers – Marlyn
  Although Marlyn is very satisfied with the homecare services, last minute cancellations can leave her in a difficult position.
• Challenging emotions and feelings – Marlyn
  Whereas outsiders might judge you, Marlyn learned that other caregivers understood her frustrations.
• Impact on health – Marlyn
  Two years ago, Marlyn hurt her back helping her husband; she still lives with the effects of the injury.
• The future and caregiving -Marlyn
  Marlyn and her husband designed their home to meet their future needs. She is amazed, however, to see how many things could have been better adapted to her husband's disability.
• Providing support – Marlyn
  Marlyn realises, during the interview, that problem solving is a big part of caregiving.