Rapid onset of dementia & the stages of grief. I don't know what the next step is or how to get there. - AgingCare.com

Rapid onset of dementia & the stages of grief. I don't know what the next step is or how to get there.

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I'm so glad to read other's comments as it's helping me to piece together a timeline for my 92yo mom. Although she lives with me, she was completely self-sufficient in Jun/Jul (meals, dishes, laundry, feeding the cats, meds), including still driving. Then she got a terrible case of bronchitis and was flat on her back for 3-4 weeks. Once she got over it she seemed back to her normal self, just a little fatigued. My son & I went to the East coast for 9 days in Aug, and her text messages started getting unreadable, and strange. She would text me at 1130pm her time to say she just woke up & took her blood & shot her belly (diabetic) and was having breakfast! So I would immediately call her to try to straighten her out. Once we got home it turned out she had stopped taking her meds (one was Namenda for dementia-but she had actually asked her Dr for it back in May because she was becoming forgetful). But the telltale sign of worse times to come were her severely swollen legs.


In Sep on the way to a Dr appt, she fell getting into the car and broke her ankle (hairline fracture). It was so difficult for her to walk so the Dr. ordered her a walker. But because of her swollen legs she also got a referral to a cardiologist who diagnosed AFib & Aortic Stenosis. In Oct. after an angiogram to prepare for heart surgery she had difficulty keeping up her O2 level in recovery, so home & portable O2 were ordered. Even with all of these physical setbacks she was still climbing the stairs to go to bed every night.


Now, after heart valve replacement (TAVR) Nov. 14 & a new pacemaker Nov. 16, she is not the same person she was before this all started. Climbing stairs is out of the question, so she sleeps in her recliner downstairs. But I have to sleep there too because she constantly removes her O2 & arm sling (to keep her arm at her side due to the pacemaker) & tries to rip off the bandages over her pacemaker. She can't do anything for herself, including bathing, dressing & going to the bathroom. She sometimes refuses to eat & can say such mean things. For example, after my telling her for the hundredth time to put her O2 back on she said she wanted to slap my face to make me shut up. Several times she has taken all of her clothes off & a couple of times when she goes to the bathroom & takes her pants & diaper off, when she puts them back on she puts her diaper on top of the pants.


Because she has said to her PT & Dr a couple of times that she wants a gun or pills to end everything, she was just prescribed an anti-depressant.


My mom has been my best friend since high school. We used to talk about so many things & loved watching the History & Travel channels together. Now our conversations are about her oxygen, food, meds, bathroom activities, and the date & time.


I'm learning that there are stages of grief when "losing" a healthy parent. I started out in denial, refusing to accept that any of this was happening. That quickly turned to frustration, which quickly turned to anger & I found myself screaming at her constantly. The anger turned to (I'm embaressed to say) hostility & I would slap her hands and once her face when she took off her O2 or ripped off her pacemaker bandages.


I was so ready to scream at her Dr.'s that I didn't sign up for this! I don't want to bathe, dress & feed her. I don't want to take her blood & give her insulin shots. I don't want to follow her to the bathroom 12 times a day only to have to change her diaper. I want to sleep in my own bed, get my nails done, take a shower (I don't want to say how long it's been), go out to eat, watch a movie, do something fun. But someone posted online that our mothers didn't get paid to take care of us when we were babies. And I think a switch was flipped in me to realize that she didn't ask for this to happen to her. She doesn't want to be a burden. She tells me she's sorry every day. She says she's trying to do the right thing. This is just as difficult for her as it is for me. So, now I think I'm at the acceptance stage of grief, but it's also accompanied by sorrow & I find myself crying at the drop of a hat because I miss my best friend-even though she's sitting right next to me, while at the same time trying to plan for her future, which will most likely be in a nursing home much sooner than I had ever expected.


So, while I'm ready to give up all of the stress & frustration of the past (very short) months, in a way I'm not, because it means I'm giving up precious time that I can never get back. I don't know what the next step is or how to get there.

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Thank you all for your comments. I was (and still am) very frustrated that the hospital & staff seemed to only want to send my mom home with no rehab. They seemed to think that since she lived with me I could handle anything that was needed. Not one person asked if I worked or about my own physical health (I have arthritis in my back which makes leaning & bending over extremely painful). I believe one of the reasons they didn't send her to rehab was because lying in a hospital bed was agony for her back, & that would be continued at a rehab facility. She adamantly told everyone she wanted to go home. But instead of deciding what was best for her, they listened to her & sent her home, which was not the best option. They also didn't ask about our home. We live in a 2-story with all bedrooms & full baths upstairs. The only downstairs "bathroom" is a toilet & sink that barely fits her walker. So not being able to climb stairs means no shower & no bed(s) to sleep in.

She was given home PT, but when she came she said only 6 visits were approved (2x/wk). She was going to tell them it needed to be increased to at least 14 visits. No one has even mentioned "home health care" for bathing or helping with meals or night monitoring.

Her oxygen was prescribed because at the hospital in recovery from the angiogram in Oct even on 3 liters of O2 her sats were in the mid 80's. I bought a fingertip oximeter & while she was recuperating I would check it during the night. I nearly had a heart attack! I did a video because I didn't think anyone would believe me. Her heart rate dropped to 35 and her O2 sats dropped to 53% with a HIGH of 82%. The Dr had to monitor her sats while she sat & walked & as long as it was below 86% she was prescribed O2 24/7. Now that she's home after the surgery when she's without O2 for a while (trip to the bathroom or eating at the table w/o it) her O2 sats go down to 70%. So she definitely still needs it 24/7.

We have no close family. Her only living brother lives in Utah & has his own health problems (at age 90). Her son lives overseas & her daughter lives in AZ & is dealing with a mentally challenged adult daughter. So, I'm it. My son is 18yo and attending college. He does what he can watching her while I go to the store. But he is a very heavy sleeper and wouldn't wake if there was an explosion. I am a light sleeper (born of motherhood?) & notice her every move. So sitting next to her I can monitor when her arm reaches for her nose or shoulder. I suppose I could ask him to stay up all night on a day when he doesn't have a morning class the next day. Or maybe when the semester is over in a couple of weeks.

The cardiologist stopped her Lasix & Potassium & Digoxin after the surgery. So she's only taking Namenda for dementia, Gabapentin for leg nerve pain, Oxybutinin for overactive bladder, Mirtazipine for depression, & some basic things like aspirin, multi-vitamin, D3 & Calcium for her fractured ankle, and the occasional Tylenol w/codeine for arthritis pain.

We've both agreed that she can use the diaper as needed, so she only makes a couple of trips to the bathroom now. It's good exercise for her, but also difficult because of her arthritis & general muscle weakness. It's obviously not a perfect solution, but it saves us both some frustration, and some angry emotions. She would spend 30min on the toilet then an hour in her chair, and repeat. Sitting on the hard cold toilet (with a metal commode with handles) just made her knees hurt worse.

I'm assuming Home Health Care should be covered by her Medicare supplement insurance. Would her PCP or surgeon have to request that? Has anyone ever gone from hospital to home then into a rehab facility? Although she would hate the hospital bed, I know she would get better with trained care & PT more often than 2x/wk. I'm also assuming that would have to be ordered by the heart surgeon since that was the reason she was in the hospital in the 1st place.

I'm so glad I found this website. It helps to not feel so alone anymore.
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I'm only going to address a few issues, as most have been well covered.

1. When my father's pacer was changed out last in 2012, I asked the surgeon about an arm sling, and similar precautions. This doctor, a renowned electrophysiologist, said that the arm sling wasn't used any more. Bandages weren't even mentioned; I don't recall whether Dad had any or not.

2. Acclimation through rehab should have been a consideration, followed by home heatlh care.

My first thoughts were to wonder how much experience the cardiologist had in pacer implants. That's past tense now, but the therapy is not.

Getting therapy in a facility may just complicate the situation; it's hard to tell, but it would be another setting and more acclimation to what can be a demanding schedule.

Outpatient therapy at a hospital affiliated therapy unit would be more helpful, but also more inconvenient, especially as winter creeps in.

Perhaps it's better to have home care, so start researching home care agencies, contact them, ask questions, of which an important one is whether or not the agency assigns the same therapist to come for every scheduled visits, or whether or not they play revolving therapists.

I discovered that this year when an agency sent different people, based on who was available when scheduling was done the night before. That agency was terminated after less than 2 weeks. It was too confusing to have so many strangers coming, and there was no continuity in therapy planning even though the agency claimed there was.

Also ask the cardiologist who performed the surgery whether the hospital has cardiac rehab. My father had a month or so of that after a heart attack back in the middle '90s. Held at the hospital, the patients were monitored by attendant nursing personnel. It was still an outpatient basis, as I took Dad back and forth for therapy, but the difference was that it was strictly for cardiac issues, and in the presence of nurses.

3. One med used for A-fib, about which to be concerned, is Amiodarone. We learned only after a cardiologist had prescribed it for years that it can cause loss of smell and taste, and it actually did that.

4. In my experience with my parents and sister, it's not unusual to order home oxygen post surgery. However, that oxygen use should be monitored medically to determine if it continues to be necessary. The suggestion of doing so yourself with a Pulse Ox is a good one. Check her oxygen saturation rates while sitting, standing, moving (before and after).

Another issue is whether or not oxygen was ordered for night use only or 24/7. I would also ask the doctor's office (assuming they're electronically linked with the hospital) to give you a readout or list of her Sat rates before and after the surgery. I couldn't help wondering as well if she went into CHF during that time, and that no one mentioned it but merely prescribed oxygen.

Regardless, oxygen use should be monitored by a medical professional periodically to determine whether continued use is necessary. I assume no referral was made to a pulmonary doctor, or that the cardio hasn't scheduled appointments for needs assessment for oxygen?

Medicare is very, very stringent about oxygen needs and documentation.

I still am annoyed that no home health care was ordered. I'd politely ask the doctor about that,

One last suggestion, and that addresses the frustration you're both feeling. When she's awake, forget about what else needs to be done and just spend some time reminiscing, listening to her favorite music, and trying to relax both of you. It'll set the groundwork for a better relationship, and can be continued when either of you need a stress break.

Good luck.
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Some of the meds prescribed for Afib will have horrible side effects so check everything out and see if any match Mom's symptoms and ask Dr if anything can be stopped or replaced.
As others have said anesthetic can have a devastating effect on the demented brain.
There is no easy aswer for you but you sound as though you are exploring all options and will make sensible decisions for you both hard as that may be.
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You have written what many feel when this sudden turn of events occurs. It's shocking how soon a person can seem to all but disappear right before our eyes.
As Glad mentioned your mom may be needing some time to recover from the anesthesia and since you didn't know any better you may have felt rehab wasn't necessary. NEVER skip rehab when it is an option. If for no other reason than to get rest yourself. Your elder will come out stronger as a result.
For now get her a UTI test to be on the safe side. You can pick one up at the drug store, take her to urgent care or at the drs office.
An o2sat/pulse monitor might relieve your anxiety about her o2. You can pick one up at the pharmacy for about $30. Maybe less online. Ask her dr for a guideline and when it's ok she might be able to leave the oxygen off for awhile.
You mentioned PT. Is she getting therapy at home? Ask her dr to order HH. They can come in and monitor her vitals. Set up her meds. Check her bandages etc. An aid can be ordered to come bath her, change her linens, a nurse to do the blood work. Just tell the doctor you can't do it and she needs help. It may not seem like much help but it is huge when you are trying to do it all yourself. They can also check her for a UTI.
At least you can get a shower while she is getting her shower if you get a bathing aid in.
Try meditation. It can revive you similar to a nap. There are great recordings being offered to guide you through the process. You and mom could do them together.
If you are hitting each other you both really need to try some anxiety reducing exercises if not medications.
Again, I agree with Glad. The anesthesia probably did a number on her. Given time she might very well recover some ground.
Also you might ask her doctor about stopping the namenda to see if she is having side effects from it. Just a thought. She (and you) have been through a lot in a short period of time. It sounds like your impulse is to volunteer for all her care taking. You have to pace yourself. Start adding layers of help where you can. Don't try to do everything yourself. You are not up to it. Try to get a friend or sitter in for a few hours so you can get out for some maintenance. Have your son stay over so you can get a good nights sleep. You'll be surprised how much better you will feel.
You've figured out that this isn't all about mom. You have to stay on top of it, like labor pains, or it will swallow you up and then you can't take care of either of you. Set a time limit on the recliner sleeping. Figure out alternatives. You both have to have your rest. Not just mom.
Let us know how it goes.
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I'm so sorry. I thought I was getting, not hardened, but sort of used to the experiences that we've all been sharing for all this time, but I read your post and burst into tears.

You've had no time to adjust. Looking back, I realised that although it started "officially" in 2011 or so, caregiving had in fact been creeping up on me, inch by inch, since 1999 and before. You, you're used to a totally independent mother and then suddenly, whammo! - you have this childlike person on your hands, it's all new, it must be completely overwhelming.

You must get help with the personal care. Nobody can just step into it all at once and cope emotionally, it's too much to expect. Find some professional caregivers; and as for losing out on important moments, having help won't stop you from assisting with routines, it just means you won't ever again have to handle a situation alone that you're not prepared for.
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If she had pacemaker surgery in November, are you saying she still has bandages? That seems a long time. And the keeping her arm in a sling, is that still necessary?

Talk to her doctor right away about getting her to rehab. I think she needs a lot more care than can be given at home right now, especially by one person!

The comment about our mom's not getting paid to care for us was made in a very different context. But to that point, the obligation to provide care, imho, goes in one direction, parent to minor child. Adults have an obligation to prepare for their own old age and shouldn't count on their children as caregivers. You arrange for her care. You don't kill yourself doing the job yourself.
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2dcb, yes it is very difficult to watch a parent, healthy or not, decline like this. To give you a bit of hope, mom may snap out of it. Anesthesia is very hard on an old brain. She should have gone to rehab after the surgery where they are much better trained and equipped to provide care. This may be a start of a long, slow decline, or it may not.

My stepdad had a hip replaced at the age of 84. He was completely loopy for about three week s then started returning to his normal, pre-surgery self, fortunately. My mom, on the other hand, had a hysterectomy and chemo because of cancer at the age of 81. That was the beginning of her downward, long spiral into Alzheimer's. She passed on June 1 this year at the age of 90. She had been diagnosed with Alzheimer's 2-3 years before the surgery.

Two examples of elderly and surgery, very different results. You never are able to predict an outcome and any surgery should be carefully considered on anyone, but especially the elderly.

Check into getting mom into rehab to ease your burden, and provide her the care she needs. If then decided that she needs nursing care the transition would be a bit easier.
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