I am her daughter. Ive been on the this forum several times and have appreciated the help. My step dad is in complete denial about his roll here. He is not pro active in the application for medicaid. There is no long term care. He has not retained an elder care atty and only because I pushed did he request a PRI from my mom's GP. My hands are tied. She doesn't want me in her house cooking or cleaning so I have to do what I can on the sly. There is no verbal support from him. I feel for him because he has been doing this for a while but his way of handling things is to go work in the barn or cellar or garden now that the weather is good. I came on the scene to help and I can work around her now that I am learning. I am by no means perfect. I slip up on things I say.
We all went for her yearly neurologist appointment (the yearly assessment) and I called in advance and said I am the daughter of the patient and the HIPPA form is not signed but we need to try to get that done and then I and my stepdad have questions for the DR if we could have a few minutes before or after in private(not in front of mom). Well she refused to sign the HIPPA for me to speak to the doctor and the step dad asked no questions. The this appointment was a bust except for getting mom on a low dose of seraquel. There was no admission of the hip pain she has been having or what to do if she doesn't eat and how to handle anger etc.
So I thought about things and finally said to my step dad I am leaving. I was supposed to be here to help.Before I got here my step dad said come and stay rent free (thats great since when do you ever charge your own daughter to stay in your house?) He says I will by the groceries and then pay you what your moms social security check is 600 per month. I told him time and again its not about the money its about getting her dialed in and figuring out how to keep her safe and fed and loved. He wants to go back to work next month (he is 71 this year) but doesn't need the money. I did the food shopping and he reimbursed me with checks (I never cashed them) and then he yelled at me that I spent too much money on food. A big shop every 2 weeks about 170.00 and said that they only spend 70.00 every 2 weeks. Anyway I told him forget about the money that is not my focus and that I will pay for the food. his focus is not on her its on money. Their house is paid for they don't have any major bills and between SS for both of them and SS they are ok.
So when I told him Im leaving he flipped a lid and yelled at me go ahead and bail. As we were having this conversation my mom had started walking out the back property on her own and he did even blink an eye. There is 15 acres and very cold fast moving creek back there where you can't been seen if yo are standing by it. I went after her, but said to him your first priority should be your wife then your family and then your job. He won't speak to me now.
He has now told everyone but me that he quit his job. True? Not true? I don't know. What would you do at this point. I have this codependent issue from the past the is poking its ugly head when it comes to my mom. BY the way I gave all of the checks back to my step dad, purposefully taking money out of the equation. In the 6 weeks that I have been here I have been yelled at, thrown things at me and kicked out 3-4 times (Attempted anyway). Any words of wisdom are greatly appreciated. Yes there are other siblings but they are not in the picture (except the criminal older brother that I recently prevented from coming by calling his parole officer, yet another thing the step dad didn't do anything to help with.
The AL will have to have someone to divert the husband while someone else is working with the wife. Not an expert, but maybe a smaller size for the wife's incontinence briefs and then bed liners, too Then if they can limit what she drinks after about 3 pm. Just some thoughts. Anybody else?
There is a complication now, however. The wife is resistant to some of the help she needs and while they were trying to get her to take a shower and she was pushing the attendant away, the husband slapped her shoulder to get her attention and cooperate. She did little slaps back on his arms and it is a big deal now with the facility wanting some action plan in place if this occurs again--like separate rooms or separate beds so they won't be so bothered at night when they want the wife to get up and go to the bathroom because she keeps urinating all over the bed, even while wearing something to catch it. The husband doesn't want them to bother them so he can sleep, but can't agree to separate beds and thinks this whole hitting thing is a bunch of B.S. He's never abused his wife and doesn't think these open hands "hits' on the arm for attention purposes constitutes anything significant. Frankly, I agree. So one of the options is to go back to their condo and have 24 hour care provided there by another agency. It's more expensive than assisted living/memory care, but cheaper than having 24 care in the assisted living/memory care unit. They have been happy with the facility and I have suggested that the attendant for the wife just use verbal reminders for the husband to not touch her when they are trying to work with her. Verbal encouragement would be fine, but nothing more. The AL facility wants more draconian measures in place to protect their butts. I don't have any other good answers. The wife looks for her husband whenever he is not with her. She won't go to bed unless her husband is already in it. She really needs to be with him and he is not an abuser in any way, so I am getting frustrated with the "rules" and their need to have unsatisfactory alternatives "ready." Perhaps another reader can provide insight from the nursing perspective why such contact is a big deal.
I have been in that stage of waiting for something bad to happen also, with two friends of mine for whom I am their POA for their health care and their finances. They have no children or close relatives, so it is only their friends that can help. The husband insists they are fine at home and they do manage to get through the day. The wife has frontal temporal dementia, which the husband refuses to recognize. No one can force them to leave. I was taking them grocery shopping once a week and usually seeing them at least one other time, but some weeks almost every day. We were leaving town for about 10 days so I arranged for Visiting Angels to come twice a week for 3 hours a day. I was amazed at her skill in dealing with the wife and how she was able to get her to do things like wash her hair and brush her teeth. I fully intended to keep using her after my trip, but when I got back, the wife became incontinent and started to wander. I was told she needed 24 hour care, so two different ladies from Visiting Angels are providing that now. It is not cheap, but my friends have enough money to cover things until their long term care insurance kicks in after 90 days. The husband doesn't want to live their condo, but I convinced him long enough for him to sign a deposit check to an assisted living/memory care facility I had researched on their behalf. He has since forgotten this, forgotten his wife is wandering, forgotten she was incontinent, but I am proceeding anyway. It was the wandering and incontinence that was the "something bad to happen" that I was waiting for. I am not sure how this will play out as we proceed with the paperwork and try to figure out if this move is the best thing or whether some other form of 24 in-home-care is better. Both are costly. The AL/MC nurse told me that the husband might have a 30% loss of cognition with this move, so I am wondering if the move is a smart thing to do on his behalf. I want them to stay together, so both have to go or both have to stay in their condo. He has dementia, but no alzheimer's or any other medically defined mental issue. I am wrestling with the "what do I do?" part as well, trying to figure out what is best. My wife wants them out of the condo so we can have a real break from their care, and she does have a point. Our lives have become "taken over" with their concerns. I keep saying that this is "hard, but not a hardship" as I am doing this out of love for my friends, however it is wearing and stressful. Any good suggestions for Picasso and me would be most welcome!
Just one woman's opinion, but I think you are doing the right thing. This is impossible!!!! Everyone in this situation needs a new situation: your step-dad, your mom, and you. I am so glad you called Adult Protective Services, the voice of OFFICIALDOM really resonates.
Most importantly, breathe, relax. Stay calm. Now that you are beginning the next phase of the journey, there is no need to panic. Figure out what you need to do each morning, and just focus on that. Stay in the day. One day at a time, one task at a time.
Do not be derailed by your mom or step-dad. Stick with the professionals and do what they tell you to do. Anyone on this site can tell you that it is darkest before the dawn. Everyone is going to be ok, they will adjust (the very words the Agency on Aging used with me just one short year ago, and I believed them!), and you can stay calm and soft-spoken through the whole thing. You can do this. Better days are coming.
Hugs!!!!!!!!!!!!!!!!!! Chin up!!!!!!!!!!
At the same time, it crosses my mind: men often do get angry at things that terrify them. He doesn't want to know, perhaps, because he can't face it? I wonder: could you find a male buddy online who can help him understand?
He's being infuriating. Nevertheless, try not to be angry with him if it amounts to being angry with him for being afraid. I don't see how you could not be exasperated, yes, but blame is not going to help.
And the thing is, if you were to do the sensible thing and clear out of there, are you not just going to go home and gnaw your fingernails off worrying about her? I'm glad you've got a team coming in to assess, though - please let us know how it goes.
You both seem to be overwhelmed. Maybe the stepdad just don't know where to start, it's not easy seeing the person you married decline. Some people just aren't cut out to be a caregiver.
Contact your local area agency on aging, they should have some in home programs she may be eligible for, they also have caregiver programs including a support program.
You don't say why mom doesn't want your help, maybe she is also in denial about her illness and abilities. It's too bad, try sitting down with your step father and begin a conversation. Tell him that you know this is a difficult time but that you need to work together in order to make sure mom is taken care of. Ask him what he needs in order to make it work. Tell him what you are willing to do to help out. Also let him know that you need his support with mom if you are to assist, then as a united front speak with mom, tell her you are willing to work together to get the job done. Mom may be more comfortable with a 'stranger' doing personal care while you take care of household things such as laundry or cleaning. Good luck.
To me it seems like the main problem is that you and he are clashing. I don't know the feelings on both sides, but know caregiving for a person with advanced dementia creates a lot of stress. We deal with the stress differently. Some people let the disease process play out, knowing that they can't fix it. I can understand that, since quality of life has to be kept for both the care receiver and giver. The main consideration is finding a balance where the receiver is safe. If you could find some way to get along with your stepfather, it would be a very good solution. You could help each other and appreciate the difference in your caregiving styles. They are actually complementary.
If you are unable to be there, having help come in sounds ideal to me. Your mother may need care in a facility in the future. Until then, I would work with the needs of your stepfather to have some quality in his life while keeping your mother safe.
Your stepdad possibly thinks he did not sign up for this when he and Mom married and has his head in the sand regarding her true condition. As he is considering placement he realizes caring for Mom is something he can not and does not want to do. You have bent over backwards to help and get things organized but does he resent this and see it as unnecesary interfearance hence he keeps away from you as much as possible. I don't know how long they have been married but they sound fairly well bonded and stepdad clearly still has good reasoning skills although you may not agree,
So in one sentence which I could have used in the first place is "Step aside and let the professionals in and allow them to recomend what is best for her going forward"
Sounds like you are on the right track. If your mom no longer knows who you are, then it is game over for her living at home. she needs professional help. I am glad you are going to a therapist. Believe me, you won't regret it.
Keep in touch on this blog and let us all know how you are doing.
Til then, big hugs.
GladImHere has some good thoughts. It sounds like there may be a need for placement that will allow for your mom's care needs, you step-dad's need to be out and about working or doing chores and your need to help.
The fact that the HIPAA form hasn't been signed could give you some problems but perhaps your step dad will listen to a third party from one of the agencies. I certainly hope so, since this is not a good situation for any of you.
Please do try to get third party help of some kind,
Carol
It sounds as if he has given your mother a good life. We all have our limits, as you know. My only suggestion is to support him in this decision, help him in any way you can while being there for your mom.
Has she been checked for a urinary tract infection. These can cause audden changes and decline in the elderly. Once treated they often return to the old baseline.
Pain in hip
Can't sleep at night
I honestly think my dad didn't see all of what was going on because he was of the what I call "me generation". Unless my mom said my hip has been killing me for days he would not equate her limping with her hip hurting. I went to doctors appts with notes for years before I felt the need to have paperwork signed and all my concerns were addressed