Staying Home but Needs Help
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"S.Unger" dsun...@shentel.net
My wife's dad was recently diagnosed with advanced Alzheimer's + Parkinson's disease. This occurred after the sudden death of his wife.
Everybody had noticed that Dad had been slowing down for a long time. But the extent of the problem did not become known until he no longer had the full-time ***istance of his spouse.
The situation has become that 4 daughters + families are scrambling around trying to deal with this. Dad doesn't accept the diagnosis. However, he is hallucinating regularly and dealing with other physical issues. Dad wants to stay in his home as he is a "farm person" but is now requiring a fair amount of help......getting dressed, having food prepared for him, medication schedule, transportation as he rarely drives anymore, etc. Dad insists that someone stay over with him every night and prepare all his meals. Everyone loves Dad but this is putting a lot of stress on sibling relationships and marriages. Tension is building as to who does what and how much.
The issue at this point is what comes next. Dad does not want to look at a residential facility....or even an ***isted care facility. He wants to stay on his "farmette" and live as he always has. His quality of life is still fairly good and he gets enjoyment out of many things. However, the overnight/meals arrangement is generating a lot of tension among the adult children. We are wondering about the possibility of an outside person providing in-home care...or possibly living-in with him. Has anyone had any experience with such arrangements?
All comments are welcome. Thank you.
niederlandi ...@monmouth.com (Genee)
First order of business is to take away them keys! No more driving for Dad. I can't imagine a person with advanced AD getting into the driver's seat.
How do you know he is taking the proper amount of his medication, remembering to take it or forgetting to take it?
Some Parkinson's medicines can cause people to do some pretty strange things. What tests has the doctor done, CT Scan, MRI? Has he been to a neurologist and a psychiatrist?
He should not be living alone with two problems like these. My brother and I hired a live-in caregiver after several years of doing it alone. We hired her from a bonded agency. She spoke very little English and understood even less. She did not work out. She was a hard worker and an honest person, but was not able to lift my mother in a way I thought was safe. She was very commanding. I was unable to correct these situations because of the language barrier.
We investigated other agencies and found one that did all kinds of background checks and following up on resumes etc. If the agency person got a bad feeling or could not understand the person she did not get a job through that agency. Now we have a younger person who speaks and understands English. She does very well with my mother and vice versa. She does a lot of talking to my mother in preparation of what's going to happen next. She was very quick to learn my mother's strange habits and idiosyncrasies. We are so happy to have her.
Yesterday my daughter, granddaughter and I went to New York for the day. Ground Zero, lunch at a Cuban restaurant, walking in Times Square and desserts at Planet Hollywood. I never once thought of home! What a great feeling!
The Cranky Genee On Wed, 5 Jun 2002 04:39:03 -0400, "S.Unger" <dsun...@shentel.net> wrote:
NO_SPAM_TO_dphar ...@gci.net (Dennis P. Harris)
On Wed, 5 Jun 2002 04:39:03 -0400 in alt.support.alzheimers, Here's where Dad's wishes and reality may conflict.
I hope that he (or all you kids) have a lot of money. Full-time in-home care is not impossible but EXPENSIVE. How expensive depends on the labor market in your area and whether you want to have a caregiver with at least a modicum of medical training.
You'll need not only a full time caregiver, but two, because no one can do this 24/7, and needs regular relief (even spouses, as much as they'd like to think so --- your mother must have been totally overwhelmed, and caring for him without help may have shortened her life).
Unfortunately, anyone with any nursing training is going to cost you a lot. Do you really want someone caring for him that can't recognize a heart attack and perform CPR? Someone not trained to deal with emergencies? And how do you perform a background check to ensure that the caregiver has not had previous problems with elder abuse, theft, drugs, alcohol, etc.? You can use a nursing service to get around some of these problems, but that's expensive, since they have to carry liability insurance and can't hire uncertified personnel if they want to stay insured. Your local Alzheimers' ***ociation ( www.alz.org for location) can probably furnish you with a list of recommended services.
So regardless of Dad's wishes, it may be that his level of care may require moving to a care facility where he can get that care from a professional staff in a safe and secure setting. If I were in your shoes, I would concentrate on what will keep your father safe and comfortable since that what he *needs*, even if it may not be what he *wants*. I know that when I have to help my mother make that decision, it won't be easy, but we'll do what will keep her comfortable and safe.
"S.Unger" dsun...@shentel.net
Dad's mother and mother-in-law p***ed away just a few years ago(in their 90s). He remembers well the insides of the nursing homes.....and he was deeply depressed when visiting his own mother in a home. We are afraid that he might just wither away emotionally if we put him in a nursing home......He likes to putter around in the barn and the garden. Without such little projects and routines, he would probably just lose heart and go into rapid decline.
At this point, one sister is giving almost full-time care and companionship. Others are ***isting as they can because we feel that he is not ready for a more intensive care facility and can still minimally function in his home. He is a nice guy and easy to get along with. However, this is difficult having someone leave their family and stay overnight at his home. His many medications must be personally administered and meals served. Although he stopped driving several years ago, he still cuts the gr*** at the property with farm machinery.......yikes!!
niederlandi ...@monmouth.com (Genee)
Dennis, I have to interject here to tell you that my mother is not left alone with the caregiver we have. My brother or I are always here. However, I would have no qualms about leaving her totally alone with the person we have. My mother is custodial care and doesn't need nursing skills as yet. The caregiver is tending my mother according to the way we have in the past and to our liking. We have no nursing skills and we have been taking care of her. Neither of us know CPR and I'm kind of glad. If my mother should suffer a heart attack it mean to us her heart is too tired to work anymore and she's trying to leave. To resuscitate her so she can try to die again would be cruel and unnatural.
The agency where we got the first person made regular calls to see how everything was. This agency invites you to install cameras if you have doubts. They also advise against working 24/7. Our current caregiver has one day off per week and after my mother is in bed about 8:20 pm the rest of the evening is hers. It is expensive, but less so than a nursing home. And the response time to see to my mother's needs is zero seconds. The caregiver is always right there.
I do realize that people can get a dishonest person no matter what precautions are taken. I have a friend who had a caregiver in the home for a whole year. They were very pleased. But you do have to be careful.
The Cranky Genee.
(Dennis P. Harris) wrote:>On Wed, 5 Jun 2002 04:39:03 -0400 in alt.support.alzheimers,
NO_SPAM_TO_dphar ...@gci.net (Dennis P. Harris)
On Wed, 05 Jun 2002 12:49:05 GMT in alt.support.alzheimers, I didn't have a problem with honesty when my mother had to have overnight caregivers for several months, but we did have a problem finding folks with any experience or knowledge without going to an agency, which here in Alaska means paying about $25/hr, which was just too expensive for Mom. Their rates are based on what the state's ***isted Living program will pay, but her income is several hundred dollars per month too high to qualify for the program.
Folks didn't want to stay more than a couple of weeks, however, even with regular days off, and one woman, though very nice, was just physically incapable of caring for her, with a number of cardio-vascular problems and arthritis; another was a heavy smoker, and we were trying to make sure Mom had no access to cigarettes, because even with her emphysema she's still a horrible addict, and would beg for a smoke(!).
Even though Mom was in a day care program during the day, I was burning out just scheduling caregivers, cooking, coordinating doctor visits/tests, etc. With her income, there's no way she can afford to do this again. Day care and caregivers together for about 3 months cost over $20,000 of her savings!
"Gwen Love" cgl...@knology.net
Genee, so glad you had such a good day.
You deserved it.
Gwen
Mary_Gor ...@tvo.org (Mary Gordon)
I detect a note of caregiver "magic" thinking - something many of us fall prey to when we are grappling with getting our brains wrapped around the full picture of what is happening, and what comes next. You can wish for something with all your might, but that don't make it so.
Your father-in-law can't see his own condition - can't recognize that he has problems, and is never going to believe he needs help, or that changes need to be made in his living arrangements for his own safety.
You have to give up hoping he will come around, will appreciate the efforts made on his behalf or like any of the changes. He isn't capable of that, and all the reasoning and arguing on the planet won't change what his brain allows him to perceive. He is never going to turn around to family members, and say, oh yes, now that its been explained, I see that you are entirely correct, and from here on I will be cooperative and gracious about what you need to do - so bring on the housekeeper!!
The reality is, your father-in-law needs supervision 24/7 (and I mean that - he should not be alone), and he absolutely should not be driving vehicles or living alone, and right now is as good as it is going to get. Believe me, it gets worse. MUCH worse, in ways you can't anticipate until they materialize. So, you have to look at the choices you have, and pick one, even if its unpalatable or expensive. You have already said that the family wants to keep him home as long as they can. That leaves you with: 1. Family members move in and look after him in the home - which you have already said is not practical in terms of everyone's other family responsibilities.
2. He leaves his home and moves in with one of you, which is also extremely difficult and burdensome for the caregiving family, and p***ing him around is disruptive as well (never mind that most homes need some special alterations to accomodate an AD patient safely -
like of like childproofing).
3. You hire full time help for him, supplemented with family help if 24/7 can't be arranged - but with full knowledge that this is at best, a temporary stopgap, and you MUST do your homework now for future arrangements. He probably won't like it, but liking it is next to irrelevent, unfortunately. You are going to have trouble finding the level of supervision with hired help while he stays in his house, unless one of you moves in as well - even if you could find people who could work 10 hours a day, 7 days a week, you'd need more than one.
I can't see other options here, unless I'm missing something. So pick one. Staring at them doesn't make them multiply into nicer ideas. Kind of like choosing between having your left leg amputated or your right leg amputated when you really don't want EITHER of them amputated.
None of the options are pretty, but maybe one is less ugly than the other two. Making the choice is the hardest part, and once you take action, I guarentee your entire family will feel better.
A word of advice -line up a residential option for him now. Things can change fast in this illness and you must be ready, if you want to have choice. Check out the options in the area, find the ones you like best, make sure they can handle whatever AD can dish out, figure out the finances, put his name on waiting lists even if you don't think you need a place now. My experience is that the decent places often have long waiting lists - and also, that many places are not set up to deal with problematic AD behaviours and issues - so they will accept him, and then kick him out if he proves a challenge, leaving you in a dither - so make sure he can stay put.
Many, many families truly heart and soul believe their loved one will languish in residential care - but very few find this to be true once they take the step, and most end up wishing they had done it sooner (mostly because the caregivers are half dead from stress by the time the situation forces them to take the step). The worst part is making the decision - and most of us have been quite pleasantly surprised at how well a family member has done in that setting. If you have picked the right facility, you might really be surprised. He might enjoy the activities and company more than you anticipate.
Mary G.
NO_SPAM_TO_dphar ...@gci.net (Dennis P. Harris)
On 5 Jun 2002 13:58:49 -0700 in alt.support.alzheimers, Mary, you said it much better than I did, and you're absolutely right. I've noticed that most folks have NO idea what they're encountering when they first figure out or find out what's going on with an AD patient, and they are so painfully hopeful (and still mostly in denial, even though they know that the situation is bad.
To the original poster, I want to reinforce what someone else wrote today: Go to the bookstore, and buy a copy of "The 36 Hour Day", and read it. Then you'll probably want to go back and buy copies for all your siblings before you sit down and decide what's going to have to happen with your father.
"Evelyn Ruut" mama_l...@ulster.net
Mary, you tell it absolutely like it is, and you said it so much better than I could have. I realize that you are right about a couple of things you mentioned above, that even I have not been properly diligent about myself, such as getting the paperwork in order in case we want to move Ida into a home at some point.
We are doing so well with the medication these days, but I don't want to be living in denial about the prognosis for the future. Doing well now is no guarantee for the future.
We expect to close on selling her home within the next two weeks, so that will close that chapter. It will be such a relief. Ida is blissfully unaware of any pressure or stress these days, and that is the best way for her, the most peaceful and most trouble free way. She has as good a life as a person in her situation possibly could, and we are doing all we can to see to it that she does. She deserves not to have any worries at this time in her life.
Only now do I realize how hard she struggled and how difficult it was to keep her life together when she was still living by herself and trying to be independent and in her home as long as possible. There is a time in our lives when we are not supposed to be independent, and that is when we are very young or very old or very ill. Alzheimers means 'very ill'...... It is very hard to make that transition, from child to caregiver, a shift of the power and responsibility that is often very difficult to make, but it is true that it must be made in as tactful and kind a way as possible. I am so grateful that it went well with us, and she is infinitely better off for it.
Regards, Evelyn
"Barrie Martindale" b.martind...@sympatico.ca
Mary, That memo of yours should be published. It is so true and so well expressed.
My mother was admitted to a nursing home just over two months ago and, although there was distress initially, after about six weeks that faded. She is now far safer, better, and better cared for, than would have been possible if I had struggled to keep her "at home".
I had thought, "I can't put my Mum in a Home. It would kill her." In fact, it saved her life, -- and mine.
It saved Mum's "quality of life" too. In a couple of weeks, I make an extra visit to the home to accompany my Mum from the Alzheimers Ward to a "Strawberry Tea" in the (secure) garden. The home is hosting it to celebrate their 25 anniversary. Little social things like that are things that were not possible for my Mum before. She would just stay home, couldn't socialise; she'd just suffer, get frightened. At the nursing home, happy little activies are made to happen all the time, and yet the medical and nursing care and knowledge of AD and all forms of dementia is excellent. But I'm most fortunate that I chose (and a vacancy arose at) the right place.
Caregivers should thoroughly inspect as many places as possible before choosing, and then choose by imagining themselves to be the AD patient, not necessarily using the same criteria as they would if it was for themselves that they were choosing.
Barrie ...
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