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turnerjbbs Asked June 2016

I am having such a hard time caring for mother. What's the best course of action?

Right now trying to sort out the best course of action. I am so burnt out caring for my Mother who is in what I think is her seventh year of dementia. I have been caring for her for five years. I have followed the post here and other web sites about different solutions. I have read over and over that people who have dementia seem okay with being put into memory care facilities allowing their children and or caregivers to walk away without guilt.


That is just not what I am experiencing. My Mother is scared. She asks me over and over what is wrong with her. She is aware that her mind is not working correctly. I try my hardest to keep the tone of my voice friendly but sometimes when answering the same question over and over I snap. When that happens she says, Why are you so mean to me? God, I am not mean at all but confess to be inpatient at times. One minute she says I never wanted you to take care of me and the next accuses me of trying to get rid of her. And in the next breath will ask me Is this my house and praise me for being a good sister. I am her daughter.


I am looking for solutions, investigating day care, hiring a companion or God forbid putting her in a long term care facility. To complicate things further I am also having memory issues. It scares me to make decisions for her when my own judgement is impaired.


Sorry, just venting I guess.


For those of you who have faced these issues I am just wondering when will she be happy and unconcerned with her decline?

OldBob1936 Jun 2016
You may try the "white lie" approach. Arrange to have her admitted to a care facility and say the "doctor" has "ordered" that she be thoroughly examined and observed for a week or so...the "week" will never end, of course. Of course, finances are a likely major problem. Perhaps she will be eligible for Medicaid.

Grace + Peace,
Bob

Georeg Jun 2016
Your have a lot going on here but I want to address at least one issue. Caregiver Burn Out is very real and should be given more weight into your decisions. You are to no good to your mother or yourself if you are trying to do to much. A one on one, for a total care patient is unreasonable. We see it all the time but it does not make it right.

Finances permitting, the first thing is getting an aide to come in for at least 3 hours per day. Have them do all the morning care and breakfast. You leave the house for some "me time". Recharge your batteries.

Above all should not look at going into a skilled home for care as failure or neglect on your part. At this point your mother has reached the point I believe you are asking about. You just may not see it. The fact she does not know who you are is rather telling.

One other thing. We speak of the here and now, but remember it only gets worse.

I am sorry if I sound to clinical, but as a home nurse I have seen this over and over and it is my best advice.

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SMacArthur Jun 2016
Turnerjbbs - I can relate very well to what you are experiencing. I also started having memory problems while taking care of my mother who was already difficult before she got Alzheimers. It terrified me to think I might have it too. I got checked out and found that the memory problems were due to the constant stress of caregiving. I took care of mom for 4 1/2 years in my home. She began falling. She is pretty big and neither my husband or I could get her up without hurting ourselves, so we found assisted living for her. The first 6 months of that were very stressful as it was not as good a facility as we were lead to believe but we found a much better one that was $800 a month cheaper, her cost of care never changes and they have been great. She has been there for 6 months now. During that time, I have been able to recover enough from the stress that I have made a lot of progress with setting boundaries, etc and my memory is improving as is my overall health. Improvement is ongoing. I have had to limit my visits to once a week but she is actually doing better as well in terms of being more willing to socialize, which helps her in general. I hope this helps you.

JJGood19 Jun 2016
I am in a similar situation, except I have only been my moms sole caregiver for six weeks. I have been with her 24/7 except for brief periods when she accepted the caregiver thinking she was a "friend"
In this short time, despite tremendous guilt, I have come to the conclusion that I can't continue to put my entire life on hold for her. I've got two teens still at home, and a husband who are all taking a back seat...never mind me. Never mind having friends over, or going out to dinner with my husband, or sleeping in, or going to visit other family out of town or taking my daughter to the golf course, or going to work...etc etc.etc.

I am going to place my Mom, "doctors orders" for some "memory therapy" into a local memory care place five minutes down the road and cross my fingers she adjusts.

If she realized how I have put my entire life on hold, I don't think she'd want me to continue.

Somehow I will have to deal with the guilt....

pattiflo Jun 2016
You situation sounds so similar to mine. My mom showed signs off and on for maybe 2 years before we told her she couldn't live by herself anymore. She moved in with me and my now 21 year old daughter. We didn't have to do that much at first, but over those 5 years as each week went on, it became more and more we had to do for her. She would sometimes go for the weekend at my brother and sister's houses but she would be mean before she left saying she didn't want to go. Last Thanksgiving she had 3 falls in one week and I had to tell my brother and sister they would have to get her every weekend or I was going to have a breakdown. This started and I also was blessed to find a wonderful lady who would come into the house and stay with her while I was at work. So she was at my house Sunday through Friday night and my siblings would have her Friday night through Sunday mid day. It did help because I was able to at least breath for a little bit on the weekends. It's so hard taking care of an adult. I never knew how hard until going through this. My mother too was confused about what was happening to her. I tried to explain it the best I could and would always tell her not to worry because we were going to take care of her. We were moving closer to having to make a decision of nursing home about 2 weeks before she passed away. She decided to stop eating, taking meds and was in inpatient hospice for about a week and a half and then went home to be with Jesus. I know God won't put more on you than you can bear, I'm a living testimony for that. As hard as it was, he was always there for me and I don't regret the time I had with my mother. I will pray for you that you can find some good answers for your situation. I hope you have family that can help you and you can also look into respite care that could give you a much needed break.

MsMadge Jun 2016
Sorry for your troubles - this is an agonizing time and there is no perfect solution - after years of being my mom's caregiver I placed her in a memory care facility 4 months ago - while I have some relief from the stress of direct care the situation is no easier and is now costing thousands of dollars a mnth - she is scared to death in the facility due to the other residents - I want to bring her home but she hates having caregivers in the house (hence the move to a facility)

If you can afford to hire help at home then do so - you may find you will need to try several out before finding the right one - agencies can run about $20/hour with a 20 hour / week min. If you hire on your own then you will need to cover social security taxes and workers comp insurance

Are you the sole caregiver for your mom?

JohnnyJ Jun 2016
A stay in a Geri-psyc ward in a hospital to find a medication that will calm her without doping her up may be a solution. My friend's health insurance paid for this when she became uncooperative with her care. It won't clear up the confusion, but will make her easier to manage. And the stay there gives you some respite. For my friend, it took 3 1/2 weeks to find the right combination of drugs. During that time her husband's birthday and their wedding anniversary came and I made sure they were together for a while on those days. She had no idea of these things anymore and the husband no longer remembered them either, but they enjoyed those times when I explained why we were doing this.

Christine73 Jun 2016
A good middle ground between home and nursing home is "respite care." Respite care is available at most nursing homes and it is covered by insurance. Respite is when you place your loved one in a nursing home for anywhere from 3 to 30 days so that you can get some respite. During that time, the nursing home takes care of everything meals, meds, showers, etc. I would recommend you do the full 30 days, no matter how hard that might seem at first. spend the first week sleeping and taking care of yourself. You have to have some recovery time. This will give both you and your mom a chance to see what it's like without committing. If you're not feeling it, at any time, go pick her up and end the respite early. You're not locked in. Your mom may find that she has made friends and that she likes the activities and the staff. You may find that this is really a better solution for both of you. If that's the case, the nursing home will help you transition her stay to long term. If that's not the case, you will have had time to look into other solutions.

akdaughter Jun 2016
It took me a long time to get there, but I finally realized that my mother was not going to be happy no matter where she lived. The only thing that would make her happy would be if I could make her 40 years younger and bring dad back. I moved her from independent living where she was needing increasing amounts of help, to assisted living, to a different assisted living (when the first one wasn't a good fit), and then to a memory care wing about three months ago. She is safe, fed and clean. I am able to work, spend time with my granddaughters and freely run errands. There are still things to do for her and some stress, but it is not 24/7. I had to take away her phone when she began calling me dozens of times each day to complain, started calling other relatives at all hours and then just dialed random numbers. She wasn't happy about losing her phone either, but it had to be done. Her medical providers have adjusted her meds to help keep her calm. I agree with Lassie. If they are going to be unhappy no matter what you do, you may as well take care of yourself.

lealonnie1 Jun 2016
In my experience, keeping elderly parents at home is not necessarily the 'kind' thing to do! For some reason, many of us feel 'guilty' for placing a loved one in an ALF or LTC facility, but it's a good idea to ask yourself a few questions before allowing that guilt to take over:
1. Is it safe for your loved one in your home. Can you bathe them & assist with showers and personal hygiene?
2. Are there a whole bunch of activities in your home to keep them busy, occupied, socialized & amused?
3. Are you home to cook 3 hot meals a day?
4. Are you able to administer various medications at various times of day?
5. Are you able to order prescription medicines and manage that whole mess?

If your loved one were to fall, as happens quite frequently, are you equipped to take vital signs and determine whether they need hospital care or not?

The list goes on and on. My father fell & broke his hip about 2 years ago. I had no other choice but to place both of my folks into an ALF so they could be properly cared for, and I stress the word 'properly.' I am not strong enough to help a 170 lb man to the bathroom, nor would he want me to. I was managing my mother's 12 prescriptions, which turned into a part-time job. Not to mention, I couldn't be sure SHE was taking them properly. My dad passed away last June, and my mother probably would prefer to be living with me, but she's been at the ALF the entire time. When I start feeling guilty, I remind myself that I cannot administer the kind of care over HERE that they are administering over THERE. Nor can I provide entertainment and socialization with other widowed women who all use walkers & tell the same story over & over again all day long. :)

My mother (89) has been going down the dementia road for a few years now, and it's gotten pretty bad lately. She's fallen down at least 5x while at the ALF, and each time, the staff rushed in to assess her. I hired a geriatric doctor who's in the ALF every Tuesday, and her NP is there on Thursdays. When mom came down with pneumonia, she was diagnosed immediately, put on antibiotics immediately, and thereby avoided hospitalization & recuperated in one week, which is truly a miracle. She's now signed up for the spa program, and is assisted with a luxurious spa bath once a week. I have a bathtub in my house that would be impossible for her to get into, never mind out of. The shower in the ALF is specially equipped for handicapped usage, and once she's wheelchair bound (which isn't all that far off), the staff can wheel her right into the stall. I can't do that.

In fact, I can't do 90% of what they can do for her. And so, I leave it to others who are qualified. I am in constant contact with the staff and the doctor at the ALF, and when I see her enjoying her time, I slap myself in the head for ever feeling guilty.

When the time comes for her to move into memory care, it's right across the parking lot.

I really think caregivers need to stop the torment, and do what's right for ALL concerned. If you can't afford a private ALF, then Medicaid can kick in. There are now lots of 'private homes' that have been turned into ALFs, and only take like 6 residents (and many are Medicaid approved). Every resident has their own bedroom, and they all eat meals together in the dining room every day. They keep one another company, and that allays many fears at the same time it keeps them occupied & social.

Best of luck to you on your journey to finding the right answer. I just hope you don't allow misplaced guilt to drive your decision.

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