Hi Folks:
I was so grateful when I found your board. Since my dad's dementia was diagnosed I've spent hours online reading facts and collecting info until I'm ready to scream. When I came across your site and started reading your postings it was like the giant fist wrapped around my stomach finally let go (or at least loosened its grip for a bit). I'm gonna jump right in with a request for help because I'm going bonkers trying to solve this problem. My father age 80 has recently been diagnosed with dementia cause unclear-we are in process of getting him screened. Problem is we have hired a caregiver (my father had agreed to this several times already but you know how things change from day to day) a really nice guy from a good company-however my father insists he is fine and absolutely refuses to have the caregiver "in his house that he built". We had a very ugly scene when the caregiver and the company's manager came to the house the first day. He also refuses to stay alone (not a real option anyway). He insists we take him to one of my sisters' houses (one is home with two young kids and one's husband is home short term after hurting himself at work) neither option is workable. When we refuse he starts calling people he knows (no easy task the phone confuses him). I can't have him calling neighbors and friends and he only needs the helper three afternoons a week we cover the rest of time and I live with him. I'm considering quitting my job and just staying home with him for now but am afraid the stress will eat me alive. If anybody has any hints on dealing with his denial of his situation and getting him to accept a helper I would be most grateful. Going for chocolate now-bless you all.

Ohhh will you share your chocolate with me??? I'll bring the graham crackers and marshmallows and we can make S'Mores! :D

Just kidding. It helps to keep me from going bonkers sometimes.

I wish I had an answer for you. My dad refuses a paid caregiver as well. He's with my sister now in another state so I have no day to day worries with him now. But when he comes back here, I'll be in the same boat as you.

There are more and more senior day care centers popping up everywhere. Would that be feasable for you? It may be good for your dad to have the type of social interaction that these places offer. And you could tell him that you're just taking him to visit some people. As you know, we sometimes have to be very sneaky to get things done in a manner where everyone is satisfied or as satisfied as can be.

Welcome to the boards, by the way!

Love, Barb

Hi there, and welcome.

We've been through various runs of this - and my SIL too is a master manipulator - she can escalate any situation to neighbours, to family up and down the country, to get the attention/result/sympathy she feels she needs.

I agree daycare would be worth a try - we are having quite good success with this after a lot of effort. The secret was finding something there for her to participate in that made her feel she was valued by the staff and other 'carees'.

From talking to social workers, it is common for people to think caregivers are actually friends visiting for a cup of tea and some scintillating conversation about their various medical conditions. That was certainly the case with SIL until someone let the cat out of the bag and she promptly started booting them all out!!!!!! I don't know whether your Dad is at a stage where you could make that work? Introduce the person as a friend of his/yours and say they would love to vsit for the afternoon and hear him talk about (insert something your Dad loves to talk about).

One thing we did that worked, but that I am not totally comfortable with, was to present it as a "compliance" issue. SIL's number one priority is to stay living 'independently' - we said that everyone wanted that for her too, BUT that the doctor has said she cannot stay there unless she accepts the caregivers. Now, I feel there is an element of bullying in that approach - especially for someone whose disease already makes them very insecure. BUT, it worked very well.

Those are a few experiences we have had that may be of use to you, I hope so. :)

love
Georgie

A couple of other late breaking thoughts that may or may not be feasible depending on your situation.

The type of caregiver can sometimes make a difference - SIL vastly prefers females over males for example, and there is one particularly sweet, angelic one that anyone would be pleased to spend the afternoon with.

Does the care need to be 'at home'? The sweet, angelic caregiver takes SIL for drives to places she frequented as a child, or to the beach or garden centre. If your Dad has a particular interest like that, then it could be more of an outing with company that he really enjoys, rather than a stranger in his house looking at him.

I see your father really wants to be with family and that is probably causing you the most trouble - that is SIL's preference too but she has come to accept the company of others instead for a lot of situations. She still gets lots of reassurance from us, but now she is OK going off on adventures with others.

cheers
Georgie

One thing that I have done, to help my grandfather to accept his at home caregiver, is to hang out with the two of them, for the first few shifts. I establish a relationship with the caregiver. The 3 of us interact, and, slowly, I leave the two of them alone, more each day. This seems to help him establish a relationship with the helper. Nonetheless, he can still get agitated and try to get the caregiver to leave. I've tried several things, like telling him we respect his space. During a difficult hour, the caregiver will give him a "time-out" and go to another part of the house. It took awhile, but he does accept the help more these days than in the past. Finding a caregiver who has experience with dementia helps alot too.

My Mom hated having a home health aide, but she was a small 95 year old woman, and had no choice. She would much rather not have had anyone with her. She also hated me for insisting. It was the worst stage of her Dementia and the worst 10 months of my life.

When it finally became clear to other family members that this was not working out, my brother took Mom into his home (he had just retired) and she lived with them for only 3 months - fell down the stairs, broke her hip, and had to go into a NH.

The only way the HHA solution was even remotely bearable was for her to go with Mom to the Senior Center where Mom had gone for 25 years by herself, but was by then getting lost and disappearing for hours at a time. The Aide came to the apartment, picked Mom up, and went with her to the center. There Mom had her usual activities but it still annoyed her tremendously that this unwanted person hovered over her, cut her meat, accompanied her to the bathroom, and back home again wanted to BATHE her. There is no question that all of it was necessary - Mom needed help with food and bathroom, needed a bath desperately, but wouldn't accept the help offered.

Fast forward to the nursing home now, almost a year after the fall. Mom cannot walk more than a couple of shuffling steps at a time. Her one leg seems longer than the other, obviously the hip joint never healed properly. She is in a wheelchair and is washed, changed and fed by nurses and aides.

BUT - her dementia has progressed to the total confusion state. She thinks she is in an exclusive country club with a Swiss chef. She loves the activites. Sometimes she says 'this Center is much nicer than the one I used to go to." Her room is her home. She never asks about going home.

My brother visits her 4 days a week, my sister calls her every night, and I call from time to time. I travel to Ny to see her every few months. Medicaid pays her bills after using up all her life savings. It was worth it to have her in a safe place, clean, dry, entertained, and happy.

For your Dad I can only recommend a Nursing Home. OR, if there is enough rationality to hear and accept it - the choice: Dad, we have only 2 possibilities for you - you either have an Aide in the house, or you have to go to a nursing home. He would probably be happier with the first choice - for awhile.

The time comes when he is not allowed any choices. This gentleman is here to talk to you and help you out. Not "do you agree?" "will you have him here?" and if he gets violent in his objections, the aide has to call 911 and get him into a hospital. Sounds terribly harsh - - - but remember - it is for his own safety!! He cannot be alone, no one in their right mind would have him in a household with small children, or a sick husband, and you will go stark raving mad if you alone care for him around the clock ... so I do hope he can be placed somewhere where all the burden is off the family.

Good luck!

love,

Martha

I'm having a hard time reading 'cause I'm sitting here crying like a dope. When I logged on this morning hoping someone might have an idea and saw all your postings about helping out with my dad's situation it was overwhelming. Anyway-I'm going to try several of your suggestions until I find one that works. Definately looking into senior day care center even though my dad was never very social. I'll try hanging out for a few shifts while caretakers here and see if that helps.

Hope everybody has a chance to take some moments of peace and joy today.

LuvMyLilDoggie-I would love to sit aroung a campfire and eat s'mores with every last one of you.

Take care-K

Dear k - welcome. My FIL (86 y/o) has had dementia for several years now, due to mini strokes. It came to the point where he could no longer live in an apt. or drive. WE took his car away and sold it and then moved him into a senior apt. complex, where they do his laundry, clean his apt. and there is lunch right down the hall. He is totally inside in a studio apt. He has an emergency button if needed. He can go and socialize if he wants , or stay in and watch TV. I take him to the store, but they do have a van that takes them as well. This has worked out for him. He is still living alone, but is surrounded by help, if needed, and people and has lunch provided everyday. He can still bath and dress himself, he just can't make new memories and sometimes he has spells where he is totally in the twilight zone. I call him everyday and when he is having a spell, I go over and sit with him until it passes. So far this is doable for us. I hope you can come up with a good solution for your Dad and everyone involved. I know it's not easy. We thought about taking my FIL in, but at the time our 2 kids were young, and we didn't have the room. The apt. where he is is very affordable and it also connects to the nursing home, if ever needed. Take care and glad you found us. I know how this can stress a person out beyond belief! Sometimes it gets to the point where you can't even think straight anymore. Take a step back, take a deep breath, and above all else, take time for yourself. Regroup and refresh and take it easy for a moment. Things will get clearer for you and your solution will come to you. God Bless, Cindy

Our at home caregiving for our grandfather works well now. We wouldn't have it any other way. We have 24/7 sitters, which I monitor almost daily. It's definitely a group effort. We all have our input. We monitor his triggers, agitation; etc. I treat it like a nursing home, that is "at home." We've senior-proofed the house. A nurse comes in on a daily basis. Sometimes we have to keep our distance. His dog helps to keep him calm. We recently invested in a high tech bendable bed. Each day has its' trials. Some caregivers leave, but, there our alot of wonderful people, who are willing to help and to be patient with him. Caregivers, with experience in dementia, seem to work the best.

Wmkcolors, I'm curious of something because I think that My sister and I will be making a decision sooner rather than later. How would you say the cost of 24/7 in home care measures up to the cost of a NH?

I'm asking this because my sister doesn't want to put him in a NH ever and if we could get in home care for him at her home, I think my sister might go for it.

Thanks.

Love, Barb

I'm not sure about the cost of a nursing home. We've always had him at home. We work with an at home health care agency. My guess is it's probably more costly to keep a loved one at home, with 24/7 caregiving. If your loved one lives with you, as in some of the cases here, I'd definitely bring in part time help, so, you don't burn out. It's more affordable than one would think. In the past, I'd let the caregiver "fly solo" from the start, but, as my grandfather's dementia has increased, the more thorough my orientation is, the better the "fit." He's fought the caregiving, and, like I said, if he sees me spending time with the helpers, he's more likely to accept them. My brother and I work together on this, so, we have the emotional support of each other. I approach it as a group effort, and I tell each helper that we are together at this so-called "round table." The more you communicate with the caregivers, as a primary family member, the better it works.

The home health aide agancy we used in New York charged us $19 an hour. The aide got paid $8. The agency kept the rest. The aides were trained and bonded, but that didn't stop us from gettng a few "lulus" when one of the reguar ones was absent.

One of them had no idea how to take Mom to the Senior Center and used the excuse "I am from Brooklyn, I don't know Queens." That alone is OK if she would have asked passersby or bus drivers - but she asked Mom, the Dementia patient - naturally they wandered all over town in the rain and it's a wonder they ever got back home - they never found the Center. I got home from work early and came in to a violent argument at the apartment door. Mom was insisting that one of the umbrellas the aide had was hers. The aide was insisting both were hers since she was picking up her daughter later on. That was a horrible morning for my mother. The 'trained' HHA was actually yelling at her angrily! Mom was in tears. My sister called the agancy and read them the riot act. The next day a nice, gentle lady came and she was Mom's aide until the move. I am sure that a nurse's aide acting like that in a NH would be fired on the spot. You do not yell and scream at a tiny, fragile, 96 yrar old lady just because she is confused!

I had to go to work every day. The aide arrived 3 hours after I left the house. Mom slept for 1 or 2 of those hours, but then got up and tried to make breakfast. I am still filled with anxiety when I think of what could have happened, yet my siblings, who were financing the aide, said "she will be fine for a couple of hours." I came home to burnt out toasters and pots and pans .. the aide also told me smoke was sometimes in the air ...

Thinking back it was a bad bad solution - if we had known then what we know now - that ALL Mom's savings would be used up for NH care until Medicaid set in - we could have had an aide for 9 hours and saved ME that agony!! There was no way I could screen the aides. The agency was supposed to do that.

It was very expensive. We only had one for 6 hours a day, but multiply that by 4 if you need around the clock ... nursing homes are probably cheaper.

Add to that the (IMO) false idea that home is necessarily better.

At home, can you provide 5 or 6 companions with whom your Mom or Dad can talk, hold hands, eat together, sit outdoors in the sun, comfort each other when visitors leave?

Can you provide bus trips, bingo games, entertainmant, ice cream socials, singing groups, guitar players, birthday parties with prizes for all?

My Mom is a VERY social person and the idea of having her alone at home with an aide is a poor existence next to the busy social agenda of the nursing home.

People have a horror of NHs based on old information, rumor and culture. "Putting her away'"etc are negatively charged words. She is not "put away" but in a happy, busy, safe place.

Love,

Martha

Each situation is different. Our experience has been better, with at home health care. Of course, I'm over there every day. We immediately let any caregiver that isn't working out go... Many have left, but, for the most part, we've found wonderful caregivers, the best ones having had experience with dementia. He goes on outings. His dog really helps to keep him calm. We also have round the clock surveillance cameras, at different areas of the house, which focus on him, though it also gives us checks and balances about the caregivers. My brother and I explore our options, on a weekly basis, and we do weekly assessments. I approach it like I am running a nursing home.

You are right. Each patient and how the disease manifests itself in his case, and each caregiver, have to do what is best for each individual situation. You are doing a great job with your grandfather, and I applaud you for it.

God bless all caregivers!

Love,

Martha