Somedays I feel like Superman, other days. . .

ghphotog

Somedays I feel I can handle anything that is thrown my way while caring for my mother and wife with dementia for the last 5 years. Seems like there is no end in sight.

Other days I'm just not ready to deal with the drama the emotions the crying, "Where am I?, How did I get here? This is not my home, I just wanna go home. . . " 
This happens day in and day out, month after month, immediately upon getting out of bed, before the coffee is even ready. Not to mention everything else that dementia has my wife doing and thinking.
Then the drama between my mom and wife as my mom doesn't understand my wife's dementia and is not able to interpret what she is trying to say. My mom is a handful just in herself. My brother won't help, My wife's family wont help. . . Thank God for good friends or I would be truly alone in this. 
Grateful for this place as well and everybody here.

Some days I just don't know how much longer I can do this and not sure I'll make it out. I can't afford to put both my mom and wife in daycare. I put my wife in daycare about once a week but I have to purchase more hours. My mom is moving back with me next week as I need to be able to keep a closer eye on her. The last time she lived with us, about 4 months ago, was a complete trainwreck and I almost didn't make through.
Had to move her back to AL for a few months but that is all she can afford so it's back with me for a while. I've pleaded with my brother for years to take our mother into his home. He has two grown daughters and an able wife to help him but he won't do it. So it's all on me.
I know everyone here is going through an incredibly difficult time in life so thank you for being here and letting me just vent a little.  
Grateful that this place doesn't have grammer police, trolls or mean spirited people scolding for not "researching"  for past posts on the same topic. yada, yada . . .
Thank you!!

David J

Vent all you want!  We’re all here to listen and help if we can. I didn’t have to care for my mother at the same time as my wife, but I can sure sympathize. I know the feeling of desperation and impending doom can be crushing at times. We all have to summon our inner Superman sometimes, but it is impossible to do it daily. I’m not going to tell you what to do, but at some point you may find yourself choosing who to care for: your wife or your mother. That is an impossible choice, I know, but that is when your brother needs to step up and contribute his fair share. Just my opinion.

Ed1937

I think you know that caring for both your wife and mother is not sustainable. I'm sorry you are in this position. Maybe it's time for you to have a real talk with your brother, and tell him in no uncertain terms that he has a responsibility here too. As long as you continue taking care of both of them, your brother will not likely step up. Don't let him off easily.

Jo C.

ghphotog; I am sorry this is happening; I can imagine it must be tremendous stress.  Ed is right; from what you have written, this does not sound sustainable to have both your wife and your mother to care for at the same time.  You mention your mother living at AL; and that she really cannot afford it.

At the risk of being too personal, if your mother would be safe, secure, have socialization, activities, good meals and 24 hour care capability in a facility or Group Home setting, would she qualify for Medicaid to provide the cost of her care?  Does she have dementia or other disability?

There is no way to force a sibling or other relative to care for a family member; their decision is their decision. I ran into that and learned early on it was best to just let go and consider myself the only caregiver for the duration.  Saved me a lot of angst.

None of  these dynamics are being forced upon you and it cannot be done without your cooperation.  From what you have written, your mother interfered with the care of your wife and upset much to such a significant degree that you moved her to an AL setting.  I would imagine from what you have written, that not much has changed. 

If your brother is not willing to take your mother in, can he help with some money to supplement your mother either going to daycare or having her remain either in AL or in a Group Home specializing in the elderly; and if your mother has dementia there are also Group Homes that specialize in that. The cost of a Group Home is often less than AL or MC and some are contracted with Medicaid; they are modeled after a private home setting.

You have decisions to make that will be suitable for yourself as well as for your wife and mother that will be able to be sustainable over time without causing highly negative dynamics; let us know how you are, how things are going, and what you decide.  We will be thinking of you.

J.

ghphotog

I've had serious talks with my brother and his serious response is that he's not going to inconvenience his family and possibly risk his job taking care of her. I'm only able to work a few hours a week for the last few years so I put my job on the line because I had no choice. Don't want to throw my brother under the bus but no I can't take care of both of them much longer. I don't want to have resentment towards him but it's hard not to sometimes.

My mom hates AL, hates the food, pretty much everything. She will under no circumstances eat anything she doesn't like so I spend hundreds of dollars a month taking her places were she can get something to eat she halfway likes. 

My brother does throw a few bucks but over time she still gets too close to not making her payment. I still have to go there every single day and fix her TV, give her medication and make sure she eats something. Not mention doctor appts. I take my DW with me everyday as well. If I don't spend at least two hours with her then I get the guilt trip from her. Partly why my brother doesn't want her. No matter where she's at all she does is complain about it.. She's a very nice lady but just extremely discontented.  My mom doesn't mean to but she adds so much stress to to an already difficult situation. She will never change.

Ed1937

Jo said "None of  these dynamics are being forced upon you and it cannot be done without your cooperation. " She is absolutely right. I hate to say this, but if your mother is causing the added stress you talk about, for the sake of your wife (and you), you have to put an end to this living arrangement. Your wife deserves better than this. So do you.

Jo C.

Apologies in advance as this is going to be a long Post as thoughts come to me. 

 I can really see how incredibly difficult this is for you; I understand and I am so sorry.  From what you have written, it seems a possible "script" may be in place from long ago for your family's lives where each family member has a role; it appears the script has never changed and everyone is stuck in the same roles even if they are now actually negative.   I am going to speak frankly based on what I have read.

Something really struck me as I read your last Post.  I understand; your mother, "will not change."  That is a given; she has dementia and she is not able to do that.  So; if your mother refuses any changes whatsoever, the option is that YOU need to be the instrument of change.

From what you have written, your mother is extremely manipulative.  She knows where the weak spots are and who can best be manipulated and that appears to be you and she knows it.   She certainly seems to know how to push your buttons to make you jump to her bidding at your and your wife's expense degrading the quality of your own life and even being detrimental to your own finances and peace of mind.   I wonder; has she had any other mental health issues in her background?

No matter what your brother's decision is; you do not have to take your mother into your own home which is not doable nor sustainable.

By giving in to all the demands your mother makes, you do not give your mother an opportunity to become acclimated and adjusted to her living environment.  She demands, you jump and give her what she wants and more.  I do wonder if this has been the dynamic throughout your life with her and if so, could be why you continue on in the same way year after year taking away your own quality of life as well as preparing for your own future by even giving up your working years.  Something appears very upside down in all of this.

Once more; no one is forcing you to do all of these things you do regarding your mother's manipulations and demands; you are able to put a stop to this, but cannot seem to be able to get out of it.  It can be hard to know what to do sometimes.

Because things are so far over the top and out of control, because you are not able to move forward in a positive way, I would strongly recommend seeking the advice of a professional Counselor.  This person can help you to discover insights and bring much to the future and help you to gain balance in your life.  You are a caring and loving person, but that should not mean to your own detriment.

Frankly, if I were your brother, considering the overwhelming unhealthy behavioral dynamics of your mother, I too would never, ever take her into my home; that would be folly and he knows it.  Your mother is safe, secure and in care in her setting.   It is just that she is demanding and knows how to manipulate to a monumental degree to get what she wants.  I even wonder if your mother would benefit from seeing her MD specialist and have her medication adjusted as it seems she is not in good stead with her medication at this time.

You can choose to stop all of this.  Simply stop.  I cannot fathom spending hundreds of dollars a month to take your mother to restaurant meals because she does not like the food at her AL setting; or that you go daily to fix her TV; or that rather than have staff dispense her meds that you go to do that; and that you comply with the demand that you MUST spend a minimum of two hours a day with her every day AND that you have to take your poor dear wife with you to do all of this when your wife has her on needs and her own sufferings with her own advancing dementia.  I wonder how your wife does with this daily trip to your mother's ALF; certainly not easy on you.

You are a caring person, but  from what you have written, it appears you are being taken egregrious advantage of.  ghphoto; this appears to be a significantly dysfunctional situation.  Again; happening only with your cooperation.  Is your mother's dementia advanced where she would be better served in a MC setting or a higher care setting?   Would she benefit from medication adjustment from her dementia specialist?

If your brother would handle the finances, (wonder if anyone is on your mother's accounts or has financial DPOA); he could simply take the responsibility to ensure that the AL fee is paid for each month in a timely manner.  You cannot depend on your mother doing that if her dementia is so advanced that her judgment, logic and memory are compromised.

If there are no DPOAs for Healthcare and Finance, it may be that at this point, you and your brother may need to file for Guardianship which would then make managing things much easier as you would then have the ability to manage all of her care and finances without her interference.  Just a thought.  I think both you and your brother would greatly benefit by consulting a Certified Elder Law Attorney; he/she could give much good advice on how to manage and how to set things forward to your mother's advantage for now and in the future and could discuss Guardianship dynamics.

I am not saying to abandon your mother; but it is about getting a grip and releasing yourself from the dysfunction that is negatively affecting your and your wife's lives - all with your ongoing cooperation.  If you dropped all the running to her demands, she would indeed begin to eat the food at AL - if she complains, so  be it, but the meals and snacks are provided for which she is paying.  If her TV goes blotto because she does not know how to operate it, someone from AL can assist her with that.  If she needs her meds dispensed, the staff at AL will provide that  service.  If she refuses these things, let her refuse for a bit; it will change in time.  Then . . . it would be good make your visits less.  Perhaps once a week; this would need a break . . . if you need to, tell her you have the flu and cannot go out and then next that your wife has the flu and you cannot go out . . . that should give you a week or two to break the ongoing long term negative dynamics.  It is within your power to change that; uncomfortable at first, but doable.  Once you have had a week or two break from her wherein she must depend on bonding with the AL staff, then you can build a healthier relationship by no longer cooperating with the manipulation.  If she calls and calls on the phone, simply put it to silent answering.  Must see to it that she gets her rent paid; brother can do that - if you have been spending hundreds a month on restaurant meals she has demanded, then some of that can be added to what your brother can donate to ensure rent fee is paid and paid on time. 

After reading all you have presented, I can well understand why you do not want her in your house on top of caregiving for your wife, and why your brother who appears to have a healthier attitude does not want her in his home.  It is not his responsibility and his families health is; do not blame him, we all make choices for what is right for us.  You appear to care for and about your mother, you can visit her a day or two a week, and can bring treats once in awhile, but you can also be healthy and have a life of your own and pay the attention and care where it is really needed - that of caring for yourself and your wife who needs much care for her dementia.

Please do consider reaching out for Counseling and an Elder Law Attorney for peace of mind and getting all the ducks in a row for yourself and your wife's and mother's  needs.  I so hope you can break the co-dependent chain that binds.   Your life and your wife are the ones in need at your home; your mother has all she needs where she is - it is simply a situation where one is not the willing participant in the demands and dysfunction when the buttons are pushed and to let her adapt to and depend on the care in her AL setting.

You are a good person trying to find your way through all of this and I so hope you will be able to do so. Once again, it may be that a good Certified Elder Law Attorney and Counselor can bring much relief and set together good future planning.  Please do let us know how you are doing, we will be thinking of you and we truly care; best wishes again being sent your way.

J.

P.S.

1. There is a very easy to use TV controller with only a few large buttons that can be found online at the Alzheimer's Store.  Maybe that would be helpful for your mother.

2.  If your mother goes out of control and refuses meds and the facility can no longer manage her; another option would be for her physician or an ER MD to have her admitted to a Geriatric Psych Unit where she would get adequate assistance. She would be assessed on a 24 hour continuum and have meds adjusted while watching for effectiveness and any side effects. That may be a helpful service to get her in the best situation considering she is so over the top in behaviors at this time which also affects her quality of life.  Medicare pays for this.  One could work with the Psych Social Worker letting her/him know that she is NOT discharging to your or your brother's home and a list can be provided for care settings that you can screen if she cannot return to her ALF.

Ed1937

Gh, I hope you take Jo's post to heart. She is so right in what she says. Sometimes the best advice is not what we want to hear, but it really is for own good. I'm sorry you are in that situation.

Annen1014

Excellent advice

ghphotog

All the advice is great, thank you!

It's complicated and a long story.