My mother has been living in my home for the past six years. She is in good shape financially and in relatively good shape physically. Her state of dementia is severe. Most of the time, having her here is doable. I am able to have a caregiver during the day for about five hours/day. The struggle is what is the right thing to do. I have always believed in the concept of caring for our ageing parents. When I read the comments from folks on this forum, I almost feel like a fool. It seems that most of what I read on this site encourages family members to put their LO in an appropriate facility. At times, when she is whining incessantly, and I just want some space, I think that a facility is the answer. Then, I agonize over how poorly it would work for her. She is needy, like a child needing constant attention. I had her in senior day care and she was kicked out because they couldn't give her the attention she was demanding. I know that she is happy here with me and my husband. Am I being an idiot for not putting her elsewhere? The internal struggle is so difficult because I know that having her here affects us all. My daughter, who has been here for the past year due to Covid, has really bonded with her grandmother. My daughter adores her grandmother and the time that she spends with her. The antics that my mother exhibits drives me crazy and my daughter is able to see humor and be compassionate. I can be that way much of the time, but then there are those days when she is going through her late afternoon craziness and I just want her gone. I know that she will continue to deteriorate. She has since I first moved her into my home. I just don't know what decision I can live with internally. For a little background, my father was dying and I drove him across the country and into a facility for his last month. He didn't want to die away from family. I saw him sporadically while he was still alive since it was an effort to find the time to be with him. That was two years ago. To this day, I suffer that I wasn't available for those final weeks. It haunts me. I don't want to feel that way with my mother.
The goal is to prevent premature placement into a SNF while living at home, which provides respite for the family.
They will pick her up in the early am, take to the center & bring her home in the afternoon. Kinda like she was going to school, however, she’ll receive all her meds, appropriate exercise & activities to meet her individual needs & the appropriate care based on her doctor’s diagnoses.
They offer breakfast, a snack & lunch. By the time she returns home, she’ll be tired & you can discuss her day during dinner.
The centers are regulated by the Dept of Aging, so the care is top notch.
I mention this because adult day care isn’t able to provide that level of care or attention. Adult Day Health Care does & can.
I applaud you for your love & devotion to your mother! I would assume she was a good mother which is why you feel this way. My mother is a horribly abusive borderline still in a hospital setting because SW is having difficulty placing her. She’s called the police on the hospital twice & driving everyone nuts. However, they declared her incompetent & have to find a legal guardian because I said no & explained why in writing. I agreed to be her decision maker until this process is completed & she’s safe in an AL. If it were my father who was 360 the opposite, I’d do everything I could for him because he did for me. I understand your not believing in sending your patents away. Which again, leads me back to an ADHC/CBAS in your area. Google it, if that’s not what mom previously tried?
I wish you the best & personally think your being too hard on yourself. Your a wonderful daughter. There is also a test called the Burden Interview given to CG’s to help assess the very question your asking.
I feel confident you will make the right decision for yourself, your family & mom because your asking the right questions now.
Best of luck🌹
There are those people here on this site who will tell you what you SHOULD do, as if there is only ONE 'right' answer, I've seen it here in the comments. That's nonsense. There is no one 'right answer'. You are not a 'fool' for caring for your mom at home and you're not a fool for placing her in a Memory Care AL. Elders who live in Memory Care are not 'alone' and they are in good company with others who they can be friendly and interact with. So those who paint this horrible picture of life in the dungeon of Memory Care don't know what they're even talking about.
That said, you know it's time to place your mom when you feel depressed; at the end of your rope and like you can't or don't want to go on any longer. Because YOUR life is of equal value to HER life. You know it's time to place your mom when she's no longer safe in your home; if she is able to get outside and wander away or into chemicals to make her sick. Or if she's reached a point where she's playing with her feces and then refusing to shower. Things can and often do reach that point with AD. Then you can't be expected to handle that degree of illness and she has to be placed.
In the meantime, keep emotions out of the equation, if possible. Know that if you do place her, you haven't 'abandoned' her and you'll be a frequent visitor. You'll go back to the role of being a daughter instead of a caregiver. When I go visit my mother in Memory Care I bring her pretty blouses and special treats to eat, or something homemade that I've cooked. I used to take her out to dinner before she became wheelchair bound and too hard to muscle around (she's a large woman). I speak to her every day (in general) on the phone and manage her medical affairs and everything else from my desktop. It's hardly 'abandonment' and there's no guilt involved at all.
I suggest you get some counseling to deal with the 'haunted' suffering you still feel about placing your dad. Having the feeling that we can or should be able to prevent our loved ones from dying or that our presence will somehow affect their end of life experience is something you need to purge yourself of. When my father was at the very end of his life, I chose to go home and wait for The Phone Call from hospice b/c I did not want to witness him taking his last breath and be left with that as my final memory of my father. I'm glad I made that decision, to this day, and know that it did not affect the outcome of when or how he passed. He's with God and at peace, and for that I'm happy. He's with me in spirit every day of my life, and for that I am grateful.
Whatever you decide to do about your mom's care, you'll still BE caring for her; either at home or in Memory Care.
Wishing you the best of luck coming to terms with the decision and accepting that it's the right one.
that is when you decide.
I do want urge you to be sure you are tied in to your husband's feelings. My ex-husband is the one who decided my Mom would live with us in a granny apartment. It was the "straw that broke the camel's back". I ran away from home and divorced him. I used to say, "My mother and my ex life together". I would laugh and then explain she was in a granny apartment.
How much actual care does your daughter give her grandmother? Maybe she needs to do more hands on care. As others have suggested, maybe meds for Sundowner's would help.
There is no right or wrong answer to your dilemma. But, please listen to what your husband and your body are telling you. I hear that up to 40% of caregivers die before the one they are caring for.
((HUGS))
There is a fine line between having your Mothe relive with you and allowing her to manage your life by her physical, emotional, and psychological needs. The decision will have a positive effect on your life and hers, not to mention your daughter, and spouse!
Be well!
In retrospect, wish I had put her in diapers and kept her home a little longer. While in the SNF, I continued to take care of her hair. After her Tuesday shower, I would come and “roll her hair” and put her under the hair dryer plus cut and clean her nails that were often dark with poop. I don’t know how I could have managed her health/doctoring if she had stayed home with me. If I thought a UTI had returned, I would find the nurse practitioner and tell her. Easy. The negative side: they left her in her wheelchair after meals instead of putting her in bed. She had lost the ability to sit up. I walked in several times to find her sliding out of her chair. She also had skin injuries on her legs.
Hindsight vision: I wish I had given up on the bedside potty and diapered her and protected her bed appropriately. Because she was bedfast, she was not a danger to herself. I could have kept her home a little longer.
You already suffer regret over dad so you would probably have same issue over mom. Use her money to give you a little peace for as long as you can.
Big decisions take time to work through. Spend some quality time with yourself weighing all the facts, considering EVERYONE involved, and looking into the future with the different possible scenarios. I think you will make the right decision.
I write from the patients point of view. I was diagnosed with Early Onset ALZ in June of 2016. Most recently my Neuropsych Exam, said I've moved to Moderate to Severe Dementia. My DW and I disagree with the results and we have an appointment to discuss the results with the Doctor in early June. The Doctor says I should have 24/7 care, my DW and I agree I've moved in to the middle stages, but not severe needing 24/7 care.
I've told my DW and all four of my children ranging from 40-14, that when I am at the point that I can no longer participate in the day to day activities of helping out in the house then it is time to put me in a MC or Skilled Nursing Facility. I also contend I want to be placed 100mi away from our home so that my DW and children don't think they have to visit me every day. My DW is 8 yrs younger than me and I want her to go about living life.
Two of our three children live in other states leaving our oldest in his mid 20's living at home and our 14 yr old. My oldest 40 lives in another state he agrees with my position we talk, but have rarely seen him over the last 15 yrs. I've told all three of my adult children, when it's time for me to go in to a MC facility, let mom do what she want's to go on with life and don't give her any grief if she wants to date, or divorce me and remarry. Our two 20 somethings understand, I don't think the 14 yr old is ready to hear this, but we'll tell her when we feel she's ready. We've enjoyed 27yrs together married and dating. She has a lot to offer another man. and I want her to enjoy the rest of her life. She's never had any medical issues, we've practiced our faith ever since we started dating.
My point is that, you must do what is in the best interest of you your DH and children, and what you believe is right for your mother. Do not let outside influences lead you down a path you don't want to walk on. I watched my maternal uncle who was a Priest die from ALZ and my stepfather die from ALZ, they both were in MC Facilities. I know they received the best of care and were placed in the best place for themselves. The difference is one of my sisters worked in the facility my uncle was in, and my stepsister, lived near my stepfather. They were still both worn in to the ground. I don't want that for my family, and I've shared these thoughts for more that 20yrs, so this is not jibber-jabber on my part. I want my DW and family to thrive. I hope you find this comment helpful.
I'm wondering if your mom is experiencing sundowning later in the day. Perhaps her doctor can help her with this; I've heard that light therapy before 7 pm may be of help.
Caregiving is very hard, and it is stressful...but I never regretted it. Mom was my entire universe. I love her dearly. And mom never did suffer...she was very peaceful and was on hospice for two years. They were great supplying me with diapers, bed protector pads, tube feeding, tubing, feeding pump, hospital bed, table, oxygen, and whatever else I needed. But I did all the care. We never had to open that "comfort pack" and her death was the most peaceful you can ever imagine. She never needed any narcotics or psychotropics and hospice came over daily when she was actively dying.
I walked mom everyday for five years. She loved the park. She had a special walker. TO this day I look at that park and I sink into a mourning remembering walking her daily. I miss her terribly and it's been 1-1/2 years ago she died.
Even with the twilight of her life, I kept her comfortable and I worked hard to sustain her. That is something I can carry with me the rest of my life. I did my duty caring for her, and she had a good life even with AD.
YOU have to anticipate what I went through and you need to learn how to care for someone who will become 100% dependent on you. Be mindful eventually they will forget how to eat and drink, and it can take two weeks to die of dehydration. And they will be awake if you go no feeding tube route, even on hospice. That is something you and your family need to talk about, but only use that as a LAST RESORT. Feeding tubes need a LOT of care, and not to be taken lightly. It took me over an hour to feed my mom before that. And I had to give her thickened fluids one teaspoon at a time. That took hours. I did this all day long. Now mom never bothered her tube. I still kept it covered with a tube top (for comfort) to prevent pulling on it while turning and cleaning her. Her feeding tube required a LOT of care to prevent infection and the tube patent. Most people cannot handle that.
Nursing home is a tough decision. Most Asians care for their own folks. That's part of our culture. I know most Americans do nursing homes. I took care of my mom at home since that's an Asian thing to do.
When a loved one is sent to a home, it's like a death sentence. If the old person acts out or in your mom's case is needy, they just give them meds to make it easier on the Caregivers.
No loved one would want to go to an unfamiliar place that is basically only in it for the money. Sure you may be lucky enough to have a rare Caregiver that really cares but their far and few between as Caregivers get burnt out.
Your mom being at your home, is the safest, happiest, loving place she could be.
No one should die alone.
It is hard being a Caregiver but in your case your mom has money, spend it on your mom and hire as much in home help as you need to not feel overwhelmed.
You are deffiently doing the Right Thing by your mom.
You won't have any regrets in the end.
It's so sad for people to just send their loved ones away when they need them the most.
Bring in familiar surroundings is so important for people with Dementia and even in the end when they remember less and less, and may not even remember your name or who you are, they know a friendly loving face and it makes them feel loved and safe.
Prayers
The first pain is the loss of your father. Since your lack of availability still haunts you, please consider dealing with this pain that is over a year in suffering. May I suggest attending a grief group like GriefShare. The members of the group are all experiencing loss of a loved one or stay to help others through the journey they have already taken. If groups are not your "thing", consider meeting regularly with a counsellor. Counsellors are available to meet online and in person. Check either with your doctor or community of faith for suggested counsellors.
Your second pain is seeing your mother deteriorate. You remember the vibrant woman who met the needs of others - specifically you. Please consider researching about the type of dementia your mother has (the one the doctor diagnosed). Alzheimer's disease and Parkinson's disease is progressive. Stroke type dementia tends to remain stable. With information, you can plan for your mother's care over the course of her lifespan with her healthcare providers and your family. You are not in this alone. If you feel lingering sadness over her decline, please process this with a counsellor.
Managing your mom's problems. Her memory loss can cause her to have anxiety which leads to antics. Please have her evaluated for anxiety by her doctor or a geriatric psychiatrist. One of them may prescribe her anti-anxiety medications that should help with taking the edge off her anxiety. A consistent routine will also help. Her afternoon episodes are usually called Sundowner's syndrome. With Sundowner's, the sufferer is more anxious as the daylight wanes and things don't look the same. This coupled with increasing tiredness make anxiety levels rise and folks are apt to act out. The anti-anxiety medication should help as as consistent routine and more light in the afternoon/evening. You will know it is time for another caregiving option when the needs of the family, your marriage, and your relationship can not be met since every moment is spent caring for your mom. If you sense rising resentment in yourself or your family members, consider it a sign of burnout and that something must change.
I later changed my thought process to "I will keep him at home as long as it is safe for HIM for me to care for him at home AND as long as it is safe for ME to care for him at home."
Thankfully with the help of Hospice and the VA I was able to keep him at home.
Thankfully he was also VERY easy to care for he was always compliant. And luckily or not with each "problem" that came along there seemed to be a solution that came with it.
So base your thought process on safety
Is it safe for HER that you are a caring for her in your home?
Is it safe for YOU that you are caring for her in your home?
Do you have Hospice in that will provide you with all the equipment and supplies you need? I can tell you right now without the equipment I got from Hospice I would have had to place my Husband. A Sit To Stand was a lifesaver (and back saver) then progressing to a Hoyer Lift.
I also said with many decisions I made about my Husband I was ruled by 2 organs. My Head and my Heart.
Safety is a Head decision.
Letting her eat a candy bar when she really shouldn't that is a Heart decision.
Folks who hang out here are the ones who are having problems-- either the elder is mentally ill, needs much more care than can be given at home, is unsafe due to wandering or causing fires, threatening physical violence.
Or they are simply folks who aren't cut out to be caregivers, have been guilted or shamed into giving up their livelihood and/or home, or who have had an elder "dumped" on them.
You are not a fool! Caregiving for a parent at home can be wonderful, if you have the space, aptitude and help required.
My personal take is that many elders thrive in congregate settings with multiple people to interact with and professional medical oversight. To each his own.
Some of mine are when...
- it makes no difference to them as to where they are or who is caring for them;
- I start to feel their (or my) safety is placed at risk (through behavior or lost communication);
- they become confined to bed/wheelchair;
- (sadly) my own tolerance fails to rebound over several days in a row.
Of course, in your situation you need to factor in the positives of your daughter's compassion and glean some of her inspiration - it sounds mutually beneficial despite the sacrifices (and you are unwittingly a role model for her also) - but when you feel your mother will receive better care elsewhere, you'll be best to follow through.