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These are changes in physical and mental health that you may experience as a care partner.
Examples:
Examples from others who have experienced these changes:
"I get very frustrated. I am not a violent man, but sometimes I feel like smashing things."
"My outlook seems futile. I have had so many relapses and then healthy bouts that it gets discouraging."
"I get worn out, isolated, somewhat depressed, and sometimes desperate to take a break from the responsibility."
"With breaks, having exercise classes (kick boxing boot camp and yoga). I was able to channel my frustrations, focus on just me, making me feel better physically and mentally."
,Changes in the environment include changes in the home environment during the illness and changes of location from home to hospital and long-term care home.
Examples:
Examples from others who have experienced these changes:
"I got to the point that I was unable to care properly at home for my wife. She is now in a LTC facility."
"Our friends left and I felt totally isolated."
"Upon diagnosis - feeling alone, no support. I was unemployed (due to my spouse's diagnosis) and had very little hope. I was deeply depressed and did not know where to turn. Only after making a decision to move to a larger center did help become available."
,Changes in roles and relationships often happen as the illness progresses and you may need more help with daily activities.
Examples:
Examples from others who have experienced these changes:
"Every transition was a major change: loss of driving, movement, thinking, decision-making ability, change in personality... he's not my "husband' anymore. He's someone else I often do not like. Our friends left and I felt totally isolated. When children came, he put on a happy face so they had no idea what was going on for me. The personality change was so gradual over the years I didn't recognize it until it was too late for me."
"Having to say goodbye to so many little things."
"Change in role. I am now my parents' main support rather than them being mine. Watching a well-educated, intelligent man struggle to get a sentence out is tough emotionally."
"My husband changed from being a hard-working farmer who could fix anything and everything to someone who basically didn't know what a screw driver was for or how to change a light bulb. It then fell on me to do these things without making him feel stupid."
"Dad isn't able to do things that he used to. It is sad to see. I spend more time with Dad, or doing things for him. I used to ask Dad for help, now he needs my help. "
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Changes in negotiating/advocating for care are related to the continuous need to find the supports you need to help care for the person you are caring for.
Examples:
Examples from others who have experienced these changes:
"I had to spend considerable time with the many caregivers (who were good for the most part) in helping them get to know her needs, likes, dislikes, etc."
"Caregiving is a task for which no-one can ever be prepared - the journey takes many turns - I finally [discovered] respite which is most required: Respite was my salvation."
"Hired a friend to sit with my mother, so I could get out of home for a couple or three hours, once or twice a week, to work or to exercise or to spend time with myself. Also, Mom went to day program twice a week, set up by home care, homecare nurse is an awesome woman."
"I've tried to learn everything I can about the diseases that affected my parents... I've attended support groups."
,When your family member/friend moves into a care facility, your daily activities will change. You may notice changes in tasks, sleeping patterns, eating habits, diet, career, or social interactions. This can include anything that affects or alters the way you are used to living.
Examples:
Examples from others who have experienced these changes:
"There's the loss of a job, because I took early retirement. And I mean, I loved my job and I loved all the people I worked with, and it gave me that sense of empowerment. It also takes away some of your identity."
"Once you put somebody into care, that because you've been the caregiver for so long, it's hard to-you're still planning your life around that person."
"I think more about his goals than my goals."
"Think about what you want to do for yourself. Then I realized, you know what, I don't know what to do any more."
"I went from doing everything, like deciding what he'd wear, when he'd shower, when he'd shave, all of that stuff, that you're still the caregiver for that person, but you're-well, initially you become the parent to that person instead of the spouse or the child or whatever-you change your relationship. It was kind of difficult to live with somebody that had been your partner and is now your child sort of thing, and then you relinquish that to somebody else."
"Learning to plan your day around you instead of planning your day around your visits to your person that you're caring for."
"So I was still planning my life around his schedule, and you're right, it's something you have to do, to separate from that and plan your life around your schedule and fit him in. You still are taking care of that person, you're still an advocate for that person, but then you're fitting them into your schedule, not your schedule around them. It's something that's not easy to do."
These are changes in physical, mental and spiritual health that you may experience when your family member/friend moves into a care facility.
Examples:
Examples from others who have experienced these changes:
"You feel like you've lost control."
". . . and one must continually come and deal with waves of loss."
"You go out and you leave and the door behind you locks. All you could see was his new pyjamas and his eye in the door, that cracked double door and you are left with that. It was the hardest thing and the most difficult day of my life."
"Then at night, well, that was the worst part because I couldn't sleep . . . I was going downhill myself. Losing weight . . . it was just turmoil really."
"Uncertainty is a worry."
"You're in the forest and you can't get out."
"It's like survivor's guilt, in some ways; like, you feel you are surviving and living your life, and they're not. So it's kind of like being the only one off the train wreck. But is it guilt or is it grief? They talk about that ambiguous loss, because you've lost the person-you know, you've lost who that person was, but they're still there and there's still parts of them there."
"The psychological stress on the caregiver, you know. Everybody is very focused on the person who has the disease, . . . and a lot of the caregivers, . . . they're the ones dying first, probably from stress."
"A lot of it is . . . €˜cause you're in denial about it. We're conditioned to take care of that person and . . . not complain about it."
"And then the stigma when you do put them in. You've got the people that are saying, €˜it's about time you put him in', and then there's the other people who are, like, €˜he didn't seem that bad. You were managing'. You know, €˜How could you just warehouse him?'"
"You have to find it (hope) within yourself, uh, and just what gives you pleasure each day with friends and family."
Changes in the physical environment include the change of location from home or hospital to long-term care, as well as changes to your home now that your family member/friend is living in a care home.
Examples:
Examples from others who have experienced these changes:
"I'm not very motivated to do anything at home . . . I used to cook good meals for my husband and myself, now I don't want to cook at all...."
"But then suddenly, you're living at home alone, and the biggest project was downsizing. I'm still downsizing. We've got so many things that I have a hard time getting rid of, but still, bit by bit-"
"Then, here comes the downsizing, and are you going to stay in your house or move to an apartment; that's things you have to think about, for sure."
"When we talk about lightening the load, the major load is the material attachments. So I let the material stuff go, and I had a better life. When I look back, that was the best thing that I have ever done."
Changes in roles and relationships often happen when your family member moves into a care facility.
Examples:
Examples from others who have experienced these changes:
"After I initiated care from others what happened [was] I became the daughter again."
"I didn't have to, you know, be on guard all the time which again was freedom within myself . . . but I looked forward to going up there every day to visit [her]."
"It's like a, uh, permanent part-time job! You know, to a certain degree."
"I hear this all the time: €˜you've got to cut down, you've got to take care of yourself.'"
"Think about what you want to do for yourself. Then I realised, €˜You know what, I don't know what to do anymore.' I'd been looking after my mom, my dad, and that's the best I can do."
"My hope is that somehow there would be some kind of a teaching to show the whole family that they have to stand together in order for it to work well. Because even though there's a facility for your loved one, it still takes family to keep that loved one content."
"But I also accept that this is where we are, and that there isn't anything you can really do to change the situation, other than see him as often as possible, give him the support."
Changes in negotiating or advocating for care are related to supporting your family member in a care facility.
Examples:
Examples from others who have experienced these changes:
"It's still-it's a difficult transition, €˜cause you feel like you've lost control."
"I really didn't know where to go to find information. It seemed like a big void out there, and maybe I was too emotionally involved to comprehend or understand."
"Communication within the medical community; it's a power play."
"It's been a tough journey."
"Everybody just disappeared. Friends disappeared."
"You know he's safe. That's all you want: you want somebody to be safe and hopefully not distressed."
Dementia typically follows certain stages that will change the person's and family's lives. Because the disease affects each individual differently, the symptoms, the order in which they appear, and the duration of each stage vary from person to person. In most cases, the disease progresses slowly, and the symptoms of each stage may overlap, often making the move from one stage to another quite subtle. The duration of the disease is usually seven to ten years but may be much longer in some people.
The stages of Dementia are commonly referred to as Early, Middle and Late. End-of-life is described as the period when a person nears death, and the primary focus is on providing comfort measures.
The late stage of Dementia may also be called "severe" or "advanced.” People in the late stage have reduced cognitive ability. Eventually, they become unable to communicate verbally or look after themselves. They also become more frail physically and need 24-hour care. The goal of care at this stage is to continue to support the person to ensure the highest quality of life possible.
Click and download the infographic below to learn more about the late stage of Dementia.
Take the quiz below to learn some helpful tips for addressing care issues in the late stage of Dementia.
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Progression Series: Late Stage
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