My mother who has dementia living with me - Page 4

Sunnyfield · ‎04-20-2010

I cannot add much to what has been said, other than I have been there - I worked full time while my husband stayed home.

Frankly, I think I kept Mom with us longer than I should have because I knew once she went to a nursing home (the only alternative was to have Medicaid) she would truly be "gone"...It might have been healthier for her to have more interaction with others outside the home.

she passed away a month after she went to a sklled facility - by that time she was no longer speaking or eating, totally incontinent, etc.

I still feel guilty about the times that I lost patience, etc., but I remember that she (a registered nurse) once told me that she believed, given a choice, it was better to lose your mental faculties than your physical ability - losing your mental acuity is much harder on those around you...being mentally alert, but physically disabled is harder on the individual.

Blessings to you and to all the other caregivers...people who have not "been there" truly cannot fully understand...

goldensrbest · ‎03-10-2010

If she owns a house,and does not have a trust, if she goes to a nursing home ,they take everything, i hope this was planned for a long time ago.

When you lose some one you L~O~V~E, that Memory of them, becomes a TREASURE.

Bridgegal · ‎03-09-2010

Soneyfield said "Frankly, I think I kept Mom with us longer than I should have" and honestly I think many people do this. My mother died of Alz., my sister is in the early stages and her husband died 2.5 years ago at age 61 of frontal lobe demintia so I have learned and seen a lot of what demintia of any form does to loved ones.

I stongly believe that assisted living/nursing home is best for demintia patients. They need more than loving care from family; they need SKILLED care that only an appropriate facility can provide. In additon, up until some point, they need more socialization than they can get at home or in a family menbers home. They need some physical therapy, medication monitoring, regular meals and many other things that family cannot provide.

We as family need to provide for their needs first. We shouldn't feel guilty about such a move. We shouldn't feel obligated to keep them with us because they took care of us at various stages in our life. We should put them first and do what is best for them.

LilacTree · ‎03-25-2012

From the other side, being the "mom," and my illnesses progressing, I can tell you there are days when my short term memory fails me (mostly with words I never had to look up before). I will be having my yearly Medicare checkup on Monday and am hoping I have not progressed beyond "mild short term memory loss," as was diagnosed last year.

As far as my "needs," I can still take care of most of them myself, but I feel that ebbing away. I know I'm starting to feel different inside, physically, mentally and emotionally. I don't expect that to stop progressing. I see things coming that I don't want to experience, nor do I want them to have to deal with.

In short, I have always let my girls live their lives. I feel strongly that if I start getting demented that that would be a curse and too much of a burden to everyone. My girls are in their fifties, they still have lives to enjoy. I'm not saying I would go to a nursing home because that, to me, would be worse than death. But I would not expect nor want them to have to bathe me, feed me, dress me, or tend to my more private needs.

What I don't do is put a lot of pressure on my girls to take care of my business either . . . I pay my own bills online, I make my own phone calls regarding anything related to my health and/or financial matters. I order my own food online and have it delivered. I support myself and this household myself. I ask nothing of my also chronically ill daughter who has Lyme, other than to drive me to my doctor appointments.

I do not call my daughters who work full time. I wait for them to call me. I do not even text them except if it is something important they have to know. I know how busy they are with full time jobs and taking care of their families and households. I also realize they need to have their time off with their families and friends and not with me.

They will be here for a few hours tomorrow for Mother's Day, but I don't expect them to make a big deal out of it, nor would I want them to. Birthdays, same thing. I am sure of their love and they are sure of mine, and that's all that counts.

I will do everything in my power to prevent any of my daughters from having to feel as the posters in this thread feel . . . regarding how being a caretaker has taken their quality of life away.

Illness and aging is a cruel thing for everyone concerned. I agree with what @gardenman said . . . people should die while they are still enjoying life and their loved ones around them are enjoying theirs. Unfortunately, we have no control over that.

No one is ever ready to die, but I hope NJ will enact the laws of "Death with Dignity," as I know that is what I would choose.

Formerly Ford1224
We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Elie Wiesel 1986

KarenQVC · ‎05-13-2010

I assume your mother is not eligible for Medicaid because of her legal status. I guess you need to sell her house "as is" and get her into a nursing home that takes private pay without regard to legal status. There should be an agency near you that can give you names of those homes.

ROMARY · ‎04-28-2010

Another practical tip: Those large rectangle disposable under pads to place on top of the fitted sheet are a big help. I'm sure you already know about them. (Years and years ago, I didn't at first.) Wishing O/P and others the best of luck and heartfelt understanding.

'More or less', 'Right or wrong', 'In general', and 'Just thinking out loud ' (as usual).

Group 5 minus 1 · ‎03-11-2010

Talk to an attorney that is in elder care. What if the home sells and everything is taken,at least there will be peace.

'cuz every girl's crazy 'bout a sharp dressed man

just bee · ‎03-10-2010

@ROMARY wrote:
Another practical tip: Those large rectangle disposable under pads to place on top of the fitted sheet are a big help. I'm sure you already know about them. (Years and years ago, I didn't at first.) Wishing O/P and others the best of luck and heartfelt understanding.

CHUX

They're called "chux" and they are indispensable.

~My philosophy: Dogs are God's most perfect creatures. Angels, here on Earth, who teach us to be better human beings.~

Kalli · ‎03-11-2010

I didn't read most of the responses...too painful.

First, we moved our parents from their farmhouse in the country to a small apartment that allowed them to be a little more independent. That lasted 3 years but Mom was slipping into dementia so they couldn't live in that apt complex anymore.

The 6 of us free and clear own the old farmhouse and acreage. We moved parents back home and I was staying there with them fulltime for several weeks. I noticed that Mom was really quite advanced into dementia, hadn't realized how bad cuz Dad had done such a great job covering for her for years!!

Brother moved in and I took a break back home to my house. He stayed there for a few months, then sis came to take over. Mom's needs became too much so we hired caregiver to help sis.

Then Mom stared having fainting/blackouts. Finally drs said to send her to a nursing facility. Sis fell and broke her wrist after our 24" snowfall so back home she went and I was back with Dad at farmhouse. He got so lonely he asked to join Mom at the nursing facility and that's where they are now.

It's so sad. They ate healthy foods, exercised and stayed active physically and mentally doing volunteer work in many organizations, including onsite disaster relief for Red Cross. And still, with all that, they have dementia.

If we'd have been able to keep Mom home, they'd still be there. But she became too much even with the caregiver's help. She can't do any bathroom activities on her own and is now confined to a wheelchair due to unexplained and unpredictable fainting and not being strong enough to walk more than a few steps.

We tried so hard to keep them together and out of the nursing facility but it got to the point that Mom is too needy for us to deal with her at home. We are currently spending down $90K that they'd signed over to us 2 years ago. Once that's gone, they will be on Medicaid. It's $500 a day for them to be in the nursing home together. $90,000 doesn't go a long way as you can tell.

Feel like we failed but we did the best we could. I sympathize and empathize with ANYONE who's gone/going through this situation. It's heartbreaking.

Kalli · ‎03-11-2010

Wanted to add that we hired an elder attorney to navigate the spend down of parent's savings ($90,000) and application for Medicaid. It's involved TONS of paperwork and months of research since Dad had some accounts that all had to be revealed and we didn't even know about all of them!!

If Mom hadn't been so difficult to deal with, (she became physically abusive to us and to Dad and can be very mean, especially in later afternoon/evening - sundowners) there is a Medicaid program that will allow older folks to stay home with approved home care. All assets must be spent down for this program. Some folks aren't aware that this is a possibility.

And, Medicaid pays for nursing facility if assets are spent down. According to the staff at the nursing home, most of the patients are on Medicaid.

I wouldn't even begin to know how to do the Medicaid app and I'm glad we were allowed to spend money from Dad's and Mom's savings to pay for the attorney - that's an allowable expense.