Memory Care Placement

tjrjr

My Jennifer(DW) has eoad and is at point were she needs every adl done for her. We have had 24hr hha through medicare and snt but for past 2 years they will not be able to get aides and the average stay is 2-3 months before they get a day off.  I still have to work and even with the hha in the house taking off work 2-4 days a week to assist with care is really starting to beat me down financially, spiritually and mentally. Our neurologist and psychiatrist(married to each other and are the best) are constantly telling me I have to rebuild my life before I go into the dark abyss and will be broken forever. I just don't know if not seeing  Jennifer every morning and evening will put me into more of a depression. This disease really sucks when you have to make decisions that seem so very selfish. that's my rant and off to pick up new aid from train station.

Jo C.

Hello tjrjr, I can well understand the extreme challenges and heartache you are facing and I am so sorry. It is evident how much you love your wife, Jennifer, and how much effort you have been putting into seeing that she has good care.   It also seems that this care plan may no longer be working as well as it had in the beginning and that it is becoming evident that your wife needs an increased level of care on a 24 hour, seven day a week continuum.

I am just a bit perplexed.  It would be helpful to have a bit more information.  I see that your wife is receiving coverage for her home health aides through a "snt"  which I am assuming is a, "Special Needs Trust."  With this, it is mentioned that Medicare is also paying for 24 hour aide care.  

This is where I am a bit confused since Medicare does not pay for 24 hour care of a home health aide.  I may be misunderstanding.

It is also mentioned that for " the past two years they will not be able to get aides."  What does this mean and why can "they not get aides and who are "they"?"  If they did not or cannot, then how do you presently have aides?  This must be very difficult for you.

If there are 24 hour aides in the house,, why do you have to take off work 2 - 4 days a week?  I wonder if the aides are not adhering to a schedule and calling themselves off, or if it is not possible to find seven day a week coverage . . . ?

That the aides do not get a day off for two or three months is also a bit confusing.  Why is this? Is it a choice for the aides to work without days off or is it some other special agreement?

You are so right; this is a terrible strain on the well spouse and there comes a time when very difficult and emotionally laden decisions must be made.

From the way you mention this, it may be that the physician specialists have discussed placement in a care facility with you.  That is often the most difficult dynamic we must face.

If this is the difficult fork in the road you are facing, you are not alone.  I would like to suggest that you go to the Spouse/Partner Forum and place your Posts there.  On the Spousal Forum, there are many spouses including other men who are facing or who have faced issues such as this.  You will be totally understood and can benefit by their experiential wisdom and input.

Sometimes, as I found out with my Loved One, that in placing into a higher level of care is not doing something TO our LO, we are actually doing something FOR them.  In fact, the continuity of care is much higher for 24/7 care across the 365 days a year.

When there is the necessity to place a LO into care, the well spouse is still a caregiver, just in a different sort of way.   There is no more utter exhaustion which can lead to significant healthcare issues; one is also free to be the beloved spouse at the LOs bedside.  One can be with the beloved spouse as much and as often as one wishes to; yet can get adequate sleep and down time as needed for one's own necessities and the staffing stessors are gone.  Sometimes, this even has a much better  quality and continuity of care 24/7 and can be the healthiest and kindest choice for both the spouse with dementia as well as the well spouse.

We often also find that our Loved One seems even more at ease in comfort and peace with 24 hour routine and structure in an organized care setting.  Sometimes our LO can enjoy the increased socialization in such a setting; and if our LO is not that highly functioning, they can sometimes enjoy being taken by a guerney chair to music events or other activity events that they can watch.  Other times, if one is no longer able to have such input due to damage to the brain, the LO can be more peaceful with the increased care by multiple staff on three shifts by experienced aides with licensed nursing oversight.

I do think that your physician specialists may be right - they know you and your wife, and they care. They know you must take care of yourself lest you develop a stress induced health condition and become too ill to manage your wife's care.  It is hard, no doubt about that.  I had to face such an event for my LO which was heartbreaking; BUT once I adapted to the change, it was then much easier to see that it was a very positive thing for the both of us.   We do indeed have our hearts involved and there is indeed an adaptation period once a move is made.  It is all part of the process and there is light at the end of that tunnel.

With this disease and especially when it comes time for an alternative level of care, there can be much grief involved; we often do not realize we are grieving.   We grieve knowing that we must make such changes; we grieve knowing that we are farther along the path of this disease moving toward the ultimate loss.  Grief is with us on this journey - you are not alone.

I so hope that you will go to the Spousal/Partner Forum and get input from the spousal Members there.   You will find much understanding from those who are in similar circumstances. 

Sending warm wishes for peace to Jennifer's beloved husband,

J.

tjrjr

In NYS and with the way our elder care lawyer set everything up we receive 24 in home aid. The shortage of aids,covid,and my living way out in the boonies makes get reliable and competent help. The fact that they are severely underpaid and provide amazing service to Jennifer keeps me sane. Placing in memory care has its minuses in the fact that the nearest one that would accept her is 1-2 hours away and I would not be able to visit every day.

tjrjr

Our doctors sometimes are more concerned about me and say they know exactly what is happening to my DW. These posts and everyones replys help keep us all as sane as we can be.

Jo C.

Omigoodness that distance of where you live certainly explains the situation more thoroughly.   It must be so difficult to keep it all together with consistent aide staffing, etc.

I do understand about having Jennifer one to two hours away and understand what that means to you for being able to be with her.  It does indeed make a difference.

One thing I wonder about; I do not know where Jennifer is within her disease.  Would she be considered at the last stage or entering the last stage of her dementia?   Reason I ask is that if so, then it is possible that you could have her enrolled in Hospice which means more assistance on various levels. 

Insurance pays for Hospice; there is a general rule re that the patient must have six months or less to live to get those services, BUT with dementia, that is not what happens.   We have had Members here whose Loved Ones have been on Hospice service for one to two years as their condition continues to slowly change.

With Hospice, one gets ALL necessary medical equipment provided at no cost to the patient or family.  Hospital bed, commodes, lifts, wheelchair or guerney chair, etc.  An RN is assigned who makes home visits and is available 24/7 for problem issues or needs.  An aide is assigned and will come out to bathe the patient three times a week; a social worker is assigned who can assist not only with support of the family and patient but who can also assist with care planning outreach for all sorts of needs. If a person wishes, a chaplain can also be assigned.  Most Hospices also have volunteers who can spend some time with the patient so that the family member can have some time for other chores or errands, or just some rest.  One can continue having one's own physician to continue the care ordering; but there are also Hospice physicians who can provide that medical service.

Some Hospices provide incontinence supplies; others do not. If that is important, you can ask.

With Hospice, everything is done at home.  One does not return to an acute hospital for treatment unless there is an unusual need that cannot be managed within the home. One can enroll or disenroll from Hospice services at will.  Hospice will follow the patient whether at home or in a care facility.

It may be something to look into if not for now, for possible future need. 

I live in a busy large city area so we have several Hospice organizations to choose from.  Being that you are in the "boonies" as you say, there may only be one or two to choose from. You can make a call and ask to speak to the Nursing Supervisor - (not the nice person answering the phone); you can ask about their services and discuss Jennifer's condition and what Hospice will be able to provide. They can even come out and do a detailed intake.  If she is accepted onto service with your blessing, then Hospice will usually have equipment and the medication box out within just a few hours and your RN will be assigned.  They work fast.

It takes a doctor's order to have Hospice step in; but Hospice will do this for the family - they will contact the doctor themselves and get the order which relieves the family of that.

Do let us know how you are and how things are going; we will be thinking of you and we truly do care.

Also hope to see you on the Spousal Forum where you will get much more input and additional support.

J.

tjrjr

Jo

Jennifer is late stage and starting to not want to walk... when 3 months ago you couldn't stop her from walking around all day. Only thing that hasn't declined is her appetite although she is starting to take a really long time to eat meals. Working on changing Ltmc company to one that has contract with a "local" home care agency that has offered assurances that staffing is not an issue. On a not so clinical note I am getting on plane to see my son in person for the first time in over 2 years at his naval station outside Charleston. We have tried to get together at least half a dozen times that never worked out due to covid, mediocre staffing of aids and  deployment that has no rhyme or reason. 

tjrjr

I would prefer to keep Jennifer home since I feel she is much more relaxed, went to see a mc last month and even though she is not responsive in so called normal ways she tried to drag me out and was very agitated.