I am not strong enough

Vitruvius

I am the sole caregiver for DW and I am not strong enough. Not like others here who have demonstrated Herculean strength facing their LO’s care. 

These are the things I have enough strength for: I floss and brush her teeth. I wash her in the shower. I guide her in dressing. I help clean her after toileting. I clean up occasional accidents. I keep her fed, manage her meds, and medical care.  These things I can do easily because I feel I am doing something productive in caring for her. And because I am solely focused on her she is calm and cooperative. They are very little burden for me and I can bear them without concern. 

These are the things I do not have enough strength for:  DW wants my undivided attention every waking minute and becomes agitated if I am not focused on her. She is difficult to keep entertained, I have tried many things. Her day is a shifting world of delusions that she expects me to understand and participate in. Her particular dementia, Semantic Dementia (SD), results in a stream of “conversation” that she expects me to respond to and I can understand little of it.  She is often distressed by a need to do something or go somewhere, but she can’t really tell me what, and I’m sure these feelings are merely abstractions. When DW is tired she becomes more confused and agitated.

This second group of burdens stress me out terribly. DW does not recognize her suffering but I do and it stresses me out. My doctor assured me my frequent readings of high blood pressure are not due to a medical condition but to the stress.

DW goes to a four hour day care program a few days, but the respite though welcome is consumed with cleaning, home repairs, handling legal and financial matters. 

My evil twin dreams of placing DW because it to him it would mean an end to the stress. He doesn’t care that it would come with a whole new set of stressors. He thinks he could live with them more easily. I know better. Or do I?

How do so many of you here do it?

Gig Harbor

Hi V,

What is important is that you recognize that you have reached your limit. Don’t feel guilty for planning placement. If you don’t and if you become too sick to care for her she will be placed somewhere without your help. If you place her she will get 24/7 care as well as the hours you choose to spend with her. I think we forget that we are also important as people. Yes it is sad that our LO have this disease but it is likely even sadder for you. Placing her will allow you to maintain your health and supervise her care. Not placing her will cause your blood pressure to remain high and might cause a stroke. Caring for her does not mean it has to be done in your home. Good luck and please think about yourself.

Buggsroo

Hi Vitruvius,

You don’t mention your wife taking meds. Perhaps some meds would help with her hallucinations and agitation. 

I think planning on placing your wife is just recognition that you have reached your limit. I don’t think evil comes into it. Sometimes it is ok to just cry uncle.

JJAz

I think your evil twin was mistakenly named.  I think he might be the smarter twin.  Placement in a LTC facility does not mean failure or that you are a uncaring spouse.  Quite the opposite.  It means that you care tremendously . . . enough to find care for her that you can no longer provide.  Too many people continue to care for their spouses at home with bad attitudes and short tempers.  We all do what we can do and there is no failure in choosing good care outside your house.  Cut yourself a break and don't let that "good twin" beat you down.

JJAz

By the way, almost nobody can care for their spouse entirely by themselves.  If you're not ready to place your spouse, hire caregivers to come to your house 3-5 days a week for at least 4 hours a day.  You will find that the break from caregiving can be wonderfully refreshing.  Even if it just gives you an opportunity to escape to your office to play on the computer, having someone else handle the conversation demands can be very helpful.

Rick4407

Hello Vitruvius. I could have written your post just about word for word.  My DW is a couple of years older but the tissues for my struggles with caregiving are the same.  

I found, at least for now, two solutions.  One, each day is divided into segments and I just look at getting through one segment at a time.  The time until until lunch & then the time until dinner. After dinner its a very brief period until she goes to bed.  They are manageable blocks of time I can deal with.  I look no further ahead than just one day and one block of time.   "My time" is after DW is in bed.  I can do various chores and spend some just sitting time to relax.

Two, is through a friend I found a lady who has moved into our guest room.  She works during the day and does very little with DW but she does all the house work and very occasionally helps with DW.   She perhaps just as importantly provides some adult conversation in the evenings.  Adult conversation was something I was really missing but did not necessarily see.  

Placement, daycare, hourly paid help, or a "live in" helper are ways to stretch our care giving for just a few more weeks, months, or even years as the case may be.    Good luck, Rick

Marie58

Vitruvius, you are stronger than you give yourself credit for. All caregivers need help, rest and breaks. We all feel weak and inadequate at times. Can you increase her days or hours per day at the day program? Can you bring in some help as others suggested? If you end up placing your DW it won't be because you're not strong enough. I placed my DH 17 months ago, even though I was sure I could have cared for him longer at home. I was near burnout, sleep deprived, and isolated from everything (Covid didn't help that). If it wasn't for others, especially my kids, noticing things about me that I wasn't noticing, I probably would have reached burnout. Better to place before that. Blessings

Paris20

Vitruvius, I think everyone on this forum has felt just as you do, more often than we might admit. My 99 year old mother is seriously ill but I cannot travel the hundreds of miles to see her because my husband, who has AD, will not let me out of his sight. He has no idea where we are, or that he is ill, or where the toilet is if we are visiting family, where he’s been many, many times.

 I agree with others about medication and help at home. I literally wound up in the hospital almost a year ago because I thought I could handle everything myself. My husband insists that I do everything for him. However, the aide who now lives with us, does everything else. Problems remain but I am better able to deal with them, now that DH’s rages are more controlled with medication and now that I don’t have to worry about maintaining the household.

DrinaJGB

We have to choose what we can walk away from.

Stuck in the middle

I am not strong enough to care for your wife either.  I can care for mine, for now, but she is a different person.  In your shoes, I would be looking for help.  Your blood pressure cuff is telling you that respite care is not enough.

You will have to place her after your stroke.  Why wait?

DJnAZ

You summed it up for me, Vitruvius.

My wife is still capable of bathing, dressing, brushing her teeth,eating and generally taking care of herself. As quickly as she has progressed from mild cognitive impairment to what our PCP says now is moderate, I don't expect she will be doing those things much longer.

Like you I am her sole caregiver. I take care of finances, prescriptions, driving, shopping, medical, appointments, cooking, laundry, house upkeep and cleaning. Things we used to share that I do now. These are my strengths I suppose.

I'm not strong enough, however, to live with another adult I've known for over 30 years and not be able to communicate. Her version of dementia has limited her ability to communicate, read, write, understand or even express simple things. She speaks another language now. I watch her trying to tell me something, but the words are so out of context and disjointed I usually can't understand her. 

In the last 2-3 months she has started showing signs of frustration and anger when she doesn't comprehend things. I rarely understand why she is angry and asking her is pointless. The good news is she calms down relatively quickly or just forgets what set her off in the first place.

I don't know if she doesn't realize her cognitive abilities are limited or just refuses to admit the obvious. Either way I feel another level of stress as I want to help but can't.

Finally, I am really lonely. I miss our conversations. I miss her laughter. I miss just talking. She is always here, but she really isn't. Managed care may be a bit premature right now. But it isn't far away and when that time comes I won't hesitate to place her. I don't have that many years left and while I won't be able to share them with her, I need to have and live my life.

JudyMorrowMaloney

VItuvius. I get it my DH wants my attention 24/7 and I have a full time job. Luckily I work at home. He can't stand to have me too far away from him.  I just take one day at a time pray a lot and take a break for myself when he is asleep. I give him melatonin. I mix it in apple sauce.

Vitruvius

Thank you all so much for your input. To respond to a few things that were suggested:

• The day care program she attends is ramping up after being shut down for many months and will be adding another day in a couple of months. I will sign DW up for that and hope she goes without any issues, as sometimes she balks now at going as often as she does. 
• As for in home care, in my area there seems to be a shortage of decent caregivers. Several of the other spouses/LOs in the day care program have them but they are universally less than pleased. The caregiver either does little to engage the PWD, or worse just marks time.  I had a parent without dementia who needed some in home care at the end of his life and found the same to be true. And I don’t need someone to clean for us, I actually rather enjoy cleaning and have always done it. Having someone else clean would not relieve me of the stress of DW’s constant need for me and the world of delusion that entails. 
• As far as meds go, me and DW’s neurologists are working on that. Semantic Dementia (SD) is fairly uncommon so in addition to a local neurologist, DW is also seen by a neurologist at a major university medical center who is reputedly an expert in such FTD variants. We are just now discussing the next adjustment to DW’s meds.  In another thread I asked about silent seizures as the neurologist suggested that may be one explanation for her new bouts of heightened confusion and anxiety.

On the whole she is relatively content, her constant delusional state doesn’t trouble her often, it just stresses me out.  Although she sees me as several different people as the day goes on, she is comfortable with all of them and treats me/them affectionately. This is what makes it so difficult to think about placement.

I know the time will come when I just can’t be the one to care for her any more, but what will it mean for her? Will she still be as happy or will it cause her anguish? I want her placement to be at the stage in her dementia that she will be just as content in an MC as she would be at home. I have read in this forum that that time often does come, and I  hope I will recognize it. The real question is can I last that long?

Stuck in the middle

Exercise is good for stress and hypertension.

Lorita

You are stronger than you think.    All caregivers have felt like you do at one time or another - it's a natural thing to feel this way sometimes.  But, like most of us you will get through it and learn how to control your stress.  You have to learn to not sweat the small stuff - pick your battles - don't try to do everything, everyday.  There are always some things you can let go until there's a better time to tackle it.

 I cared for my husband for seven years without any help.  I'll admit it was not an easy thing to do but I know he would have done the same for me.  All caregivers have to learn to do the necessary things and let the others go for a while.  If you're stressed out, try to find something to lessen that stress - medications from your doctor, getting outside for a few minutes (you'll be amazed at how much better you'll feel after being outside for just a few minutes).  That's what I tried to do when I was stressed.  If your wife sleeps late in the morning, take that time for yourself, to relax a bit.  If she takes a nap during the day - take a nap yourself.  I don't recall if you mentioned how long you've been her caregiver but you will learn how to have less stress as you go along.

 I haven't read all the replies and I'm sure what I've written doesn't agree with most of them but this is how I managed to get through caring for my husband for those seven years.  I'd do it again if I could.   The time may come when you do have to think about placement and it will be a hard thing to do.  Don't think about how long you may have to be a caregiver - take it one day at a time, one hour at a time and sometimes even one minute at a time.  You'll be fine.  Come here and learn from those who have been caregivers for years and take note of the things they do to relieve stress.  It is stressful.  I'm sorry you're feeling so down right now.  It's good that you've come here to post about how you're feeling.  Talk to you doctor - I bet he can help you through this.

 But, if you continue to feel you can't do this, it isn't written in stone that you have to - there's always options - maybe someone to come in for a couple of hours two or three times a week so you can get outside for a brief time..  Take time to think about it.

billS

Vitruvious I agree with most of the above posts. It really sounds like you are feeling trapped between knowing you can't handle the stress and feeling you have to find a way to do just that. That is an impossible situation. "Going down with the ship" is for ship captains, not for spouses of dementia victims. You can't be any good to her if you have a stroke.

I just set up a room at a memory car facility for my wife today, and will take her there tomorrow. So I've gone through much of the struggle as you. Good luck to us both!

SandyMA

You sound very strong.  Impressive actually with all that you are doing!  Remember what the airlines tell us in case of emergency - 'put your own oxygen mask on first, then help your loved ones'.  We can not be of much help if we are not helping ourselves first. The good news is that you have recognized your limit. Having looked for places for my Mom, it can take a while to find the right place so you may want to start looking sooner than later. I believe you will know when you find the right place and the opportunity will come along.  In the meantime, perhaps you can find someone to help keep her busy and give you a break when she is home. I'm not sure where you are but I found a terrific little agency in Norwalk CT if that would be of any help.  Hope you can start fitting in some enjoyable activity soon while she is at daycare to help relieve your stress.  You certainly deserve it!