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coping help
Wishididntneedtobehe
Posted: Monday, November 21, 2022 6:39 AM
Joined: 6/20/2021
Posts: 12


Hi everyone,

I am pretty overwhelmed in my life at the moment- like a lot of people here.

My father has dementia and my mom is his caregiver.  He now needs 24/7 supervision, is mobile, and only knows who a few people are. I think he knows I am someone who cares for him, but he doesn't know our relationship anymore.

My mom started putting my dad in daycare since April this year and that was a huge lifesaver for her mostly- but also for me. My mom wasn't super social before my dad got dementia, but she's been much more isolated as his disease has progressed.

I have 3 siblings, but I am the only one that is local- and the only one that is really involved- for a few reasons.

I am widowed myself, and have 2 children that I am raising- one of my children has a disability that impacts our lives significantly. My mother-in-law lives locally in memory care because of Parkinsons. She is more impaired than my dad at this point.

We have a center in our area that has support groups- but none that deal with children who have parents with dementia.

I am in the medical field, so I know how things will progress for my family/ dad. My dad is become more agitated at times and I am worried about it being too much for my mom. She is extremely stressed out.

We live in FL and my mom's primary home was flooded after the hurricane. So there's a lot of stress all around.

I am trying to figure out how to manage this stress. I don't have a lot of people/friends who can relate. If anyone has any suggestions or input, I would appreciate it. Thanks


Jo C.
Posted: Monday, November 21, 2022 8:03 AM
Joined: 12/9/2011
Posts: 13474


Hello Wish, and a very warm welcome to you.  Though none of us ever wanted to need this place, it is a wonderful spot to find support and understanding.  I am sorry for what is happening and can imagine how all of these issues are causing increased stress and deep concern. I am sorry for the length of this Post, but based on your writing, there is much to think about.

Sometimes things pile up and there is so much to address and feel concerned about that we can feel overwhelmed.  I used to have a gosh awful myriad of so many significant matters/issues that it got to feeling like an incessant whirling, buzzing mass almost covering me that I could not whittle down to size.   Finally, I began to realize that I needed to separate each "thing" into its own separate category so I could realistically address one matter at a time to get a grip in order to gain stability and management. I even got myself a notebook and made dividers for each category; each physician, etc. to keep things separate and in order. For some reason, for me, this worked better in a concrete manner than having it on the computer. NOTE:  Also, importantly for me, I also had to learn how to not overthink and especially not to project into the future for problems that had not even happened yet and may never happen. 

Sometimes, those of us who work in a medical field seem to take on too much for ourselves; we sometimes seem to take on other people's issues quite deeply; sometimes overthinking and even catastrophizing regarding the future possibilities, and it adds to that boiling, whirling mass we are inundated by.  We in the healthcare field are used to providing care and also often rescuing and protecting people; we also see SO much in our professions that we can develop concern lest these issues come to pass with our Loved Ones (LOs), and we can translate these concerns into our own lives in a big way which may not be a positive or even come to pass.

Your MIL is in care, so she is safe and secure and her needs are being tended to; that is a very good thing.

Your father is in Daycare giving him socialization and supportive care which is giving your mother hours of respite; that is huge. That your mother is not social at this time is a smaller issue and in fact, she herself is probably trying to process all and sundry which she will work out over time - perhaps it will take a bit of a longer time, but it will happen.  She would perhaps benefit from being with a support group of other spouses with dementia, either in person or perhaps those that meet online; has that been thought of?   If she has a friend or two that can meet for lunch or coffee once in awhile while your father is in Daycare, that would give her a little social respite if she desires it.  She is probably too immersed in other issues at this point to want to try and develop a robust social life.  Sometimes we tend to measure other peoples "needs" by what we feel for ourselves and that may not be an accurate measure.

The flood; that certainly is a concern.  You do not mention if the damage is being addressed and is or has been taken care of already, or does she or yourself need to continue to be deeply involved in home rehab problems that are unaddressed at this point?  A construction or remodeling manager or primary job oversight manager to oversee any remediation may be helpful if it is a significant reconstruct/restore set of issues.  We had such a job manager at our home when we did a major re-do; he was actually doing a lot of the work himself and had a good list of excellent tradespeople he worked with, so all of that was managed by him and helped so much.  Sure did take much pressure from us while living through a mess such work causes until all is done.

In all of this, where is your mother at?  Does she feel overwhelmed and in need of relief or does she feel she can manage at this point and is where she feels she needs or wants to be at this point in time?  How is she at accepting your input and trying to be helpful?

She can, during the hours your father is in Daycare, begin to screen alternative living situations for your father for when it may be time to make such a change in his care needs or if an abrupt unforeseen issue arises.  It is always good to have a "Plan B" in the wings as we never know what the future will bring at any time; especially when we least expect it when dementia is at hand. Having a Plan B of desired care facilities that are acceptable to her will keep her from having to seek out such facilities under stress from time constraints if something unforeseen pops up.   She can use the computer in screening and can also access social workers and discharge planners in medical centers to perhaps obtain a list of facilites near where she lives. Knowledge is power.  Personally, I would stay away from the commercial facility finding groups that advertise. They give referrals only to those facilities that contract with them to pay them fees when they place a patient; they leave other facilities that do not contract with them off their lists and many of those will be the better facilities.

In the here and now; since your father has developed some increased behavioral issues  which are concerning your mother, it may be time to have him checked for a "silent" urinary tract infection which has no overt symptoms, but those silent UTIs are significant causation for changes in behavior.  Then; she can also see to it that he has an appointment with his dementia specialist, (specialists are important), to assess his status and in all probability adjust his medication.  If his behaviors go over the moon so to speak, then it could be he may be best served by a short admission to a Geriatric Psych Unit for 24 hour assessment and medication adjustment while observing for effectiveness and any side effects.  Length of stay is usually two to three weeks depending on the patient's condition.

At that point, your mother can either decide to have him return home, or if she feels she can go no farther with 24 care, he can be transferred directly from GeroPsych to a care facility. This would take the daily 24 hour stress from your mother and permit her to be the loving, rested wife who can visit her husband as much as she wishes rather than being the overwhelmed, exhausted, burned out caregiver.

NOTE:  It is also true in many instances, that our LO may possibly even do better in a care facility setting where there are no triggers for behaviors that may have existed in the home setting.  Our LOs also do best with routine and structure in their lives; not to have that will ramp up behavioral symptoms; a care facility provides that routine and structure along with 24 hout staff for care needs. There is also socialization as well as activities to watch or join in.  Most of all, no more triggers that existed in the home setting that can trigger those negative behaviors.  Just a thought. 

As for your own support; one can start slowly developing that.  Though the dementia support groups you found are not focused on adult children of persons with dementia, there is no reason not to attend such a group with the spouses of significant others with dementia.   Many care issues and personal feeling issues will be quite similar and their experiential wisdom and knowledge of available services within the community as well as understanding may well provide you with valuable input and much support.

If you have a background in faith, a place of worship such as a church, synagogue, etc., can be very supportive and an active church "family" can be a spiritual as well as a practical set of assets.

I left this for last; the most important part of all of this, is your own immediate family; that of course needs your focus.  Being widowed and having children; especially one with significant special needs is where most of your energies must be and need to be.

You cannot take on and own all of the dynamics for everyone; that is not realistic nor is it sustainable.  You are a very caring person who is trying to be as helpful as possible and are a good advocate, your mother is blessed to have your caring.  Be kind to yourself, and hardest lesson to learn is to learn to let go a bit.  You are important too, and your body may be telling you that too much really can be too much and that stepping back a bit has become necessary to preserve your own self.

Please do let us know how you are doing; we really do care.  This is a wonderful and safe place to land for much understanding. We are all here in support of one another and that now includes you too!

J.


Wishididntneedtobehe
Posted: Monday, November 21, 2022 6:22 PM
Joined: 6/20/2021
Posts: 12


Hello Jo,

 

Thank you for taking the time for such a thorough and thoughtful reply!

 

Yes, I do project into the future because of what I see at work. My dad has wandered and gotten lost at least 4 times already and I have also seen him become more agitated and at times aggressive. I am projecting what that can turn into in the future. I'm also having a hard time watching him losing skills and understanding that my mom and I will watch him get worse and worse and that's what we can expect for the future. 

My mom has looking forward to my dad's death- and I understand that.

 

My mom doesn't really talk to anyone about my dad- except may be to me and a few people she is close to. She has never been the type of person to talk about feelings, so she hasn't yet been willing to join a support group. 

She was doing a social activity with friends once a week before the hurricane but since the hurricane she's been managing everything in regard to dealing with the flooded home, and moving to where they currently live now- so that kind of stuff went to the wayside.

She has a family member who is a lawyer who is helping her with working things out with the insurance company. She hired someone to move out all the big items and board where the windows are missing but she still needs to be involved with creating an inventory of what was lost for the insurance company (more than 90% of their stuff was destroyed), and she has to stay on top of the insurance company and the attorney from the family who is helping. She just recently moved out valuables from the home because there was looters.

 

I think she is pretty overwhelmed at the moment. She asked me about someone to assist with cleaning at her house- and her just asking for help in that way is a big thing. I think she was managing better before the hurricane- since she had time to take care of herself, before the hurricane- while my dad was in daycare. and she had to change set up and routines after the hurricane because they moved to a new home.

 

So far my mom has not been open to the idea of putting him in a home. I don't think she has reconsidered the idea since the hurricane because she has been too busy with everything.

 

She had him diagnosed in a different city. I don't think he has a local neurologist, or even if his doctors know he actually has dementia. It's all been very secretive till recently. I think she thinks his sleeping more is related to progression of the disease- and the same for his behavior changes.

I can ask her if she would be willing to take him to a neurologist? But she hasn't been open to medication for behavior or for sleep in the past?

 

My mother in law lives in memory care facility- so I definitely understand what you are saying and how it can be better. my mom always looks beat down and miserable. I think if my dad was in a facility she would be much happier. I just can't make her do anything.

 

I think the difficult part for me to focus on my family first is I am afraid something will happen to either my mom or my dad if I am not involved.  Especially now after  the hurricane, flooding, and     my dad's always changing behavior. 

I do need to say that it's been really frustrating that my mom has been pretty resistant to help for a long time. My sister was actually living here in the area for a year and she left because of conflict between my mom and her. My mom was only willing to hire outside help after the hurricane- it was a sitter who actually babysits my children. I am sure that the situation could be easier if she would talk about it, and utilize more resources but I am not able to make her do that. And since she doesn't  I feel more obligated to be involved to make sure they are both ok.

 

one of the things I have wanted most is a romantic relationship and with all my family issues I feel like it would likely be impossible to have.

THanks for your input. I appreciate it.


Jo C.
Posted: Tuesday, November 22, 2022 2:01 PM
Joined: 12/9/2011
Posts: 13474


Hello again Wish; with all of the added information, it is now much easier to better understand more of what is happening.  Truly; I am sorry for all of what is at hand and for the effect upon your own life. 

I won't go into deep detail with my own over the top dementia dynamics with my LOs; but since we are both in the healthcare professions, I certainly know the feeling of having knowledge of how things are going to progress and the need to prepare in advance and having any sort of assistance refused.

Like your circumstances, my LOs also refused assistance of any sort; even visits to a physician were refused despite delusion driven behavior, often including agitation, and other dynamics.   This was deeply concerning, frustrating and sometimes kept me awake at night as I could see the danger of the behaviors, declines and risks to letting things sit as they were.  High stress for sure.

I finally had a Social Worker who worked with geriatrics arranged to see my LO.  She was a lovely professional and very kind. She spent quite some time with my LOs. Then she gave me her findings along with some common sense input.

Since I had put together a list of an entire set of help assistance needed to cover all aspects of what was happening, I had all the knowledge necessary for what was needed; it was there IF my LO would accept what really was necessary . . . however; the SW related, it was at that time not going to be accepted nor were any offerings of assistance accepted from the SW.  The SWs input was that no matter how it was presented, assistance for any change at that point was not going to be accepted.  The only thing that could be done was to let go and wait for the other shoe to drop so to speak, and then I would be able to step in with the supportive assistance that would be needed.  The SW was right.

That was a difficult thing to do and have to say, as the declines and behaviors continued it was often cringe worthy.  Things continued on as they were until finally the other shoe did indeed drop and I already had the knowledge for what was needed and could move forward quickly to assist and set things into place.  I found "helicoptering" only increased resisistance and reinforced the dysfunction; it was necessary to let go.  (Also had to look out for manipulation which had inserted itself into the mix.)

Your mother does indeed have much on her plate.   The house repair is one huge set of needs which by themselves I imagine is more than monumental.  However, the dementia issue and 24 hour care need of course is a severely crucial issue in another way.  The refusal to have your father see a dementia specialist is too bad, but perhaps your mother is just too buried in so much that she cannot manage to have to face one more situation to be dealt with.  If she would get him to a dementia specialist, there would be an assessement to confirm type of dementia present as there are so many different types and meds for one dementia can be contraindicated in another. There is indeed medication help for agitation, delusions, etc. which would bring both your mother and father more peace.

What is really of concern is the aggression which can be dangerous as well as the wandering.  Hopefully she has put safety locks high up on the doors, ( The Alzheimer's Store has very nice ones easily placed and effective.)  She also hopefully has an alarm that gets set off if a door is opened.  At night, if needed, she can even place an alarm floor pad next to the bed if she needs that sort of item.  Perhaps getting her the bits that will help with wandering dynamics would be accepted.

Since he wanders, it is a good idea to contact the local police department and ask if they have the ability to enter information re elderly wanderers into their computers.  Many if not most police departments have this capability.  They would enter the name, address, issue of dementia into the computer and if there was a need due to wandering or other issue, this information would go out to all patrol cars in that department should wandering occur.  Some departments can also put a photograph of the at risk person into the computer. 

Since your mother and father have had to move to a temporary living setting, this too will increase your father's negative behaviors since any change and lack of daily routine and structure is a huge problem when dementia is present and can actually cause behavioral issues.  If your mother would need it, there is also the option of "respite" care at a facility level for a week or two so she can gain more time to deal with all and sundry.  However; it does sound as though that would not be accepted.  Hopefully the Daycare will begin to add said routine and structure despite the unfamiliar new home setting and many different dynamics being attended to out of need. 

You can put together all the knowledge you have garnered related to nearby dementia specialists (it can take a long time to gain an appointment), and screening of Memory Care Units at various facilities using the computer, and compile other helping information for assistance re agencies, etc.  You can have this information ready when your mother is finally able and willing to accept reaching out.  Until then, it is simply something you have no control over until that other shoe does drop.

In the meantime, there is your own family to care for as a widowed parent with a special needs child and absolutely -  your own quality of life with needs and wishes for yourself.   I do not know what support you have for yourself through other family, friends, perhaps a place of worship, etc.  It would be good to put together support for yourself as much as you can. Romance in the time of dementia and dysfunction may not be in the cards at this moment, however; there is the future both the near and the far . . . if you can focus more time on your own needs even if just a bit, it may be heartening and help with possible depression.  If the loss of self is significant, and depression is an issue,  it may be that counseling would be helpful to move life forward.

Do let us know how you are doing, we are here. NOTE: If you wish to speak to a professional regarding the dementia dynamics or for venting feelings and support, the Alzheimer's Assn. has a 24 hour Helpline 365 days a year that can be reached at, (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.  There are no fees for this service. Consultants are highly educated Social Workers who specialize in dementia.  They are supportive, have information, and can often assist us with our problem solving.

Sending best of wishes your way,

J.


Jo C.
Posted: Tuesday, November 22, 2022 3:05 PM
Joined: 12/9/2011
Posts: 13474


Sorry Wish; you  mentioned aggression as one of the behaviors.   If this has become an issue along with other behaviors that are highly florid, another option if it would be helpful would be to have him admitted for a short stay at a Geriatric Psych Unit where he would be assessed on a 24 hour continuum and medication be provided with oversight for effectiveness or side effects.

While this may not be something being considered at this point in time, if his aggression becomes a potential danger, then this may be the best option for quickly addresssing the issues in order for him to stabilize.  It would be a good idea to find out which med centers in your mother's area have a GeriPsych Unit and then keep that information.  Should there be a need, many of our Members LOs were taken to the ER at the med center that has such a unit for GeriPsych and was admitted through that entry point.

It may not be necessary, but from what you have written, it is a good idea to have the information at hand for a just in case sort of need.

J.


Wishididntneedtobehe
Posted: Wednesday, November 23, 2022 6:21 AM
Joined: 6/20/2021
Posts: 12


Hello Jo,

Yes- refusing assistance is definitely what has been happening. My sister is also in the medical field and we both have been so frustrated knowing that things don't have to be this difficult. Watching and waiting for something bad to happen before someone will accept more help is really miserable. I am sorry you had to deal with that as well.

I don't know what the right amount of help to give actually is. I know she needed a lot more help after the hurricane because of how stressful things were and all the changes. I am working on figuring out good boundaries because I need to also take care of myself and my children.

Yes I really do think my mom is just extremely overwhelmed and she has a really hard time with emotions in general. And the spouse with dementia situation brings up so many emotions all the time. I think she's just having a hard time to see things clearly because she is literally just trying to survive. 

She has locks on all the doors- he currently sleeps in a bedroom with a bathroom attached- that is locked at night- so he can't wander. We have tried using a airtag in his clothing and the alerta patch. My mom now lives in a home that isn't close to water and the neighbors know my dad has dementia for the most part, so it's a safer situation.

I will ask her about seeing a local specialist again. I went to a local support group and they mentioned a doctor that may be an option. The social worker I met at the meeting also would be open to speaking to my mom, so we will see if that happens.

You have given some really excellent suggestions! 

I will put a list down in writing- of all the resources I can. GOOD IDEA! I did just contact a facility to find out about respite care. The last time I asked she said she wasn't ready but maybe she will be more open to it with time. I have noticed the more worn out she gets the more she is willing to try something- that's what happened with adult daycare.

I will also contact the police to ask if they can enter info for him about wandering. That's a great idea!

I just started the local support group and I plan to continue going. and I will keep working on finding support. I also started seeing a therapist. I typically do activities I enjoy when I have free time- so I have outlets. and I have contacted the Alzheimer's hotline several times! It's a great resource to have!

I was wanting a life partner, not necessarily romance. I am in my early 40s and have been widowed for 4+ years. I am tired of being alone and dealing with everything alone.  But yes probably this moment isn't the best timing.

Thank you for all your listening and good ideas. I certainly appreciate it. You are a great resource and help!!


Sherry Neal
Posted: Wednesday, November 23, 2022 9:51 AM
Joined: 11/22/2022
Posts: 3


I am reading this book Loving Someone Who Has Dementia how to find hope while coping with stress and grief by Pauline Boss PhD. Stress is the thing we must learn to manage she will give you tools and concrete ideas to help.
 
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