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Topic: Respite
2014-02-10 10:40:28
CrossRoads Posts: 11
Joined: 0000-00-00
Share your advice and observations about respite care received – i.e. adult day care programs, temporary respite at a long term care facility and in the home.

2014-02-10 10:40:28
bluebird Posts: 6
Joined: 2014-03-04
As my husband's Alzheimers has advanced I have tried to avail myself of more services, only to encounter a number of challenges along the way, not the least of which has been lengthy waiting lists. I have the feeling that the system is both understaffed and underfunded. There have been times when I have come so close to hitting a wall that I have wondered if there would be not just one, but two clients needing to be looked after. I'm a strong person – and I often feel fragile in this heartbreaking journey. Among the many things needing to be addressed, there is the grueling “ritual” of assessment. It seems that every new face, be it a person or an organization, that I appeal to for help has to put me through a form of questioning. Why is this necessary in our high-tech age, especially when we are dealing with services which supposedly support the same issues and operate under the same umbrella? It's already difficult, even horrifying, to make some of the decisions we caregivers are forced to make if we are to survive at all. Why is it necessary, for example, when taking a spouse to a facility for short-term respite, to be subjected to a two-hour intake (that's no exaggeration), wondering the whole time if he is going to get up and announce that he's outta here, possibly embellished with an angry stream of expletives. Time and again I have felt as if I've been to a funeral (never with closure), and instead of receiving sympathy I'm made to run the gauntlet. In all fairness, it is sometimes gentle, but not always. I'd like to suggest that all this necessary information be fed into a central computer, that information be gathered in advance of a temporary placement, just to ease an already less-than-happy experience.

I know changes happen slowly, and I have no illusions that my thoughts will bring results that will benefit me, but it is my fervent hope that others in the future will find the process of accessing help to be a kinder, gentler, easier one.

2014-03-04 14:08:41
Sharon Osvald Posts: 120
Joined: 0000-00-00
Great comments! I agree it would be amazing if there was one place to record all the important stuff about my mother - not just her medical information, but the things that make her happy, trigger her responsive behaviours and details of her personal history .

One woman I spoke with said it well, "When it comes to treating people with dementia, knowing what makes people tick, their likes and dislikes is part of their medication - it might not be a pill, but it is definitely an important part of their care."

2014-03-07 19:22:33
Sharon Osvald Posts: 120
Joined: 0000-00-00
Some of the greatest praise I am hearing from people in the lived experience network is how happy and supported they feel with Adult Day Programs for the person they are caring for. Definitely a resource that is helping families!

2014-03-16 23:10:21
cvh

cvh

Posts: 6
Joined: 2014-03-19
I too have found running the "gauntlet" of services is intimidating, and I have a medical background. Each service has to do their own assessment. Then each service has specific thing they can and can not do. There is a definite lack of coordination between the services. There was a study done in the States and they found that coordination within the different services definitely provided a far superior service to the caregivers and relieved a lot of their stress. I'm tired of doing assessments and answering the same question repeatedly to different groups!!! I'm tired of trying to figure out whom to call for what service or help.

2014-03-19 16:20:38
cvh

cvh

Posts: 6
Joined: 2014-03-19
I have just returned from a spousal support group meeting, and as usual the topic of respite came up. The gentleman in need of respite was beside himself not knowing what to do. He needs respite, but as per usual there is no space available. He was at the point where he was just going to take his wife to the hospital emergency and leave her there. Is this the type of care that dementia patient can expect since there is such a lack of resource?. I appreciate this forum and the fact that someone is "looking" in to Dementia experiences, but, I would rather have the money spent on MORE respite beds and MORE long term care beds.
The government has known for years there is an issue with hospitals and "bed blockers" occupying acute care beds, yet they have not bothered to add more long term care facilities. This will be critical in a few years, right now it is deplorable that people have to wait in hospitals for a facility to care for them.

2014-03-19 16:29:57
cvh

cvh

Posts: 6
Joined: 2014-03-19
I have tried to get my husband to go to the Day program, which I hear is excellent, however, there is a lengthy waiting list for people to be able to get into the program. There is a waiting list for Respite, a waiting list for long term care beds. I had to wait to be assessed by CCAC to be put on a waiting list.

There is a definite lack of funding and lack of space for programs and care. The solution is to provide more respite care spaces, and double the number of long term care beds. Acute care beds are very expensive and yet there are so many people with dementia occupying acute care beds, with no support or activities to fill their days. When is the government in this province finally going to get it?

There is also a need for an increase in funding for home care support, and for heavens sake, how many more assessments can be done? I know I have written about the number of assessments in another message, but, since the information in this forum is supposedly to be passed along to government organizations, I will continue to display my negative feelings about the number of assessments.

How about fewer assessments and more of the money spent on help in the home, or another respite bed?

2014-03-19 17:15:07
barb Posts: 3
Joined: 2014-03-19
There should be no need for a two hour assessment upon admission for respite. All of the information should have been shared prior to arrival.
We were over two hours in assessment as well.













2014-03-20 05:37:05
Sharon Osvald Posts: 120
Joined: 0000-00-00
CVH, your comments definitely are lining up with my conversations across the South East. Short Term respite has been the number one issue that came up - as well as long waiting lists for day programs and support to keep people home longer. The second biggest concern, besides navigation (not knowing where to find services) is the sense that people feel they are picked up and dropped and have to start from scratch every time they need a service. People are wanting better sharing between medical agencies and really - they want someone who will "manage" their whole care - not just this piece and that. Thanks for sharing your experiences.

2014-03-20 13:12:25
Stacey Posts: 1
Joined: 2014-03-22
The Alzheimer's society and myself can provide a booklet of dementia services in the area for your reference and use.

2014-03-23 17:10:04
Sharon Osvald Posts: 120
Joined: 0000-00-00
Thanks Stacey. :)

2014-03-24 14:27:41
bluebird Posts: 6
Joined: 2014-03-04
We had our first CARE experience yesterday. My husband was taken out for 4 hours, to places where he used to hang out, seeing people he used to see, going to stores he used to haunt, and it was the best respite we've had yet. Both he and the worker came back happy and excited. He had his old sense of community; she picked up bargains in the second-hand shops they visited. They even fulfilled my request to pick up a bunch of bananas, which my husband devours in huge quantities. (They actually make a difference in his mood levels) I can see sending them off with a picnic and a shopping list. The worker certainly seems to be open, and for my husband this is LIVING!
THIS is what I've known would be good; THIS is what we need. It gave me 4 hours of peace and quiet here at home so I could get some of my work done uninterrupted. It gave my husband a chance to live life on his terms for a short while. THIS is something that Alzheimers "clients" and caregivers need to have more ready access to, without the interminable waiting time, with services which may arrive too late. (We were finally expedited, and it took 9 months...)
I'm grateful for a ray of sunshine out of a heavily overcast sky.


2014-03-25 12:11:58
bluebird Posts: 6
Joined: 2014-03-04
A postscript to my thoughts about the CARE experience we had yesterday...
My husband also goes to ADC (Adult Day) and I cannot praise that programme too highly; however, yesterday's outing was entirely HIS agenda, and that is necessary as well.


2014-03-25 12:15:48
Sharon Osvald Posts: 120
Joined: 0000-00-00
Blue Bird: Wonderful that things have worked out for you and your husband - giving you the flexibility you need in your respite.

2014-03-25 22:08:28