Mom won't put Dad in a nursing home, but we think she should.
My mom is my Dad's caregiver. He has advanced Alzheimer's. Mom refuses to put Dad into a nursing home. (Money is not an issue.) She has finally gotten limited help but not enough. She never gets a complete night's sleep. None of us enjoy visiting home any more because she has become so sarcastic and one dimensional. She is not realistically assessing Dad's condition...he no longer recognizes family members and only parrots a few words. She thinks he is still "there". Although he can still feed himself, he requires constant care..he is incontinent, non verbal and immobile.We think she enjoys being a martyr. We know we are losing our dad to Alzheimer's, we don't want to lose her too. How can we convince her to be more realistic? We have suggested she get more help but she continues to carry the burden alone.
Your mother's approach to caring for your dad is steeped in tradition and experience. She can recall having heard or visited nursing homes many years ago when they were often terrible places that warehoused very old and very ill people. She also comes from a time when the marriage vows, including, ""¦in sickness and in health"¦" became bedrock principles requiring selflessness bordering on martyrdom.
My first suggestion is to continue showing your love and support for your mother and dad by visiting and showing concern. In her present state of mind, abandoning her will only make a very bad situation worse. You have to be the rational thinkers in her irrational world.
I suggest that you contact mom's doctor and have his office call her to tell her that it's time for her annual physical and she's due for a flu shot or whatever pretense is needed to get her to see a doctor. There are several issues involved here. The first is it's possible that she too is suffering from cognitive decline. It's likely that she's depressed, and even more highly likely that she is beginning to suffer from the ravages of stress that are caused by being a 24/7 caregiver for your dad, even with some in-home assistance.
Based on the doctor's findings, you may have more say as to either bringing additional help into the home or moving dad to a skilled facility. If events have do continue along lines similar to those your currently experiencing, you're going to have to take some preemptive steps to achieve the best outcome.
Start by telling mom that you love her and you're concerned that she will literally work herself to death trying to do everything and risking her own health and quality of life. If she gets sick, dad won't have anyone to care for him at home. By the way, that statement is more than a "scare tactic." Statistics show that about 66% of full time family caregivers suffer from major illnesses and disease brought on by the stress of caregiving and almost 50% of them predecease their patient.
Other suggestions that might help you include having dad attend an Adult Day Care one or two days a week where he can spend quality time with other Alzheimer's patients doing activities appropriate to his abilities. Dad's doctor, particularly if s/he is a neurologist, might help support this idea as a way to keep dad active, socialized and provide some respite for mom.
Once you can get mom comfortable with leaving dad in the capable hands of others, even for just a few hours, you can begin to discuss with her how wonderful it is knowing that dad is well cared for, and how nice it is for mom to be getting back her life and to a more normal routine. You can, over time build on this theme, with the goal of moving dad to an Alzheimer's facility in the near future. If mom recognizes that her life can be better, she will begin to accept the idea of doing what's best for dad and for her.
Visiting a skilled nursing facility is another idea. If you know of a family acquaintance currently in a skilled facility full time or just for rehab, you can suggest to your mother that you both visit that person, after you take mom out to lunch. Call ahead to let the facility know what you're doing and why, and if they have a dementia specific wing or unit, explain your purpose for the visit. By doing this, mom will see that her images of skilled nursing facilities are out of touch with the way things are in the majority of facilities today.
If you have no one to visit, call ahead to one or two facilities that you have preselected as possibilities for your dad. Arrange to take mom for a tour that includes lunch. Then tell mom that you and she have been invited to go to a lunch, and make sure they give her the full walk-through tour and show her how nice a memory specific facility can be, and share with her the idea that dad's safety and her remaining healthy and happy are key concerns you have for both of them.
Mom may not initially be receptive to these ideas, so be persistent and base all of your comments around your concern that dad needs full time attention. Tell mom that her trying to lift him or maintaining 24-hour vigils has you worried about her health, and her lack of sleep could lead to health problems and you don't want to see her become a patient too.
Your task is challenging, but as a family, you have to continually present mom with choices that she feels are really in the best interest of both she and dad. It's likely going to be very small steps, but you can get there. Having said that, should your mother become ill or injured, you may have to move quickly to make some decisions that assure both mom and dad of a safe, healthy environment that provides for the best quality of life possible for both of them.
For more ideas, search for other articles I've recently written on 3/5 and 3/6 in the archives of Caring.com that also address some of the aspects of your situation.
I believe that you should leave your mother alone. She obviously is passionate about what she is doing from what you say. Perhaps your perception of her sarcasm and one-dimensionalism is due to her perception of a lack of support from her child. Your statement about losing her, too, sounds very selfish on your part. Support your mother, be there when she needs you, don't apply pressure and drive her away from you.
Wow, I just wanted to voice my view that the response above is pretty harsh. I think you love your mom and your dad and you don't want to lose her because she's worn herself out taking care of your father when there is other help available for your mom.
My mom who is 90 also had the martyr thing going on with my dad. He had a stroke but had recovered about 95%. But my mom still treated him like he was disabled and did a ton of things for him that he could do for himself. He never pushed himself and was happy to have my mom do it. It drove me crazy because it was wearing her out and negatively impacting her health and wasn't necessary. But that was the unspoken understanding that they'd had through 60 years of marriage - mom took care of dad.
I agree with the expert, see if you can get your mom's doctor to get involved and make some suggestions. A lot of folks in the older generation listen to doctors (but not their adult children, LOL). If that doesn't work, you may just need to wait for a tipping point event, when something happens and it becomes clear that things can't continue as they are.
Good luck. You're in a tough situation and your mom and dad are lucky to have such a loving daughter.
Excuse me..it is selfish to not to want to lose your mother??...I'm not sure what planet you are from. Mother is being irrational, but children are supposed to support her lack of judgment. Supporting your mother while trying to get her to make better choices is a much better idea.
Irrational and "lack of judgment" are harsh words. And yes, it is selfish to judge your mother harshly because she is not doing what you think she should. It sounds like she is fulfilling what to her is a labor of love, and it would probably break her heart to not be able to do so.
My Heart goes out to you,I know what your dealing with. My dad looked after my mom until he became ill and went into the hospital. My sister and I TOOK over looking after here at our house. It wasn't easy she wasnt sleeping wandering and then would follow me downstairs partial dressed.She too neeed help showering and going to the washroom. It was a day to day struggle and like your family I swore she would never go into a nursing home my mom was and is my best friend.I found she was lost always wanted to go home and didnt undertand were my dad was.
We took her for her 7 month check up where they took one look at us and her check up and said she needs 24 hour care that we cant provide. i feel for your mom but it comes a time when your health starts to suffers which was happening to us and then you are no good to fight for them when they do go to a home. I never thoght I COULD cry that much when I left her there,my mom was my best friend. I Just had to keep thing she was safe sleeping and not wandering in the middle of the night someone was there for her. I will pray your mom will realize she can no long due it,but it is the hardest thing to do.Help your mom all you can and maybe taking him for a check up and the doctors may be able to be supportive. I to like your mom] was the same way,you just dont want to have to make that decision and hold off as long as you can. I Think the doctors may be able to convince her. Its a terrible thing for a family to go through my mom is now in the last stages and can go anytime to watch someone you love breaks your heart. Try to hang in in these difficult time. Its hard my dad was the same way. I beleive though the doctors they can make her understand, if she gets sick he needs someone to adovate for him.
I agree with anonymous and Knipp Are you giving your mom the support that SHE needs I take care of my husband it is not eazy but how much better it would be if my son called once in a while to see how things are going or better yet come to visit I now that is not so eazy sins he lives in a other state but thay seem to be able to do all kinds of other thing Wy not spend a day with us. And no I will not ask he is fifty and shoukd now better he is brought up to know Be nice and support your mom she needs that more than anything
Agree, don't put pressure on your mom. But don't leave her alone either! If you really care about her, come to visit, be there for her. Has nothing to do with martyr. I take care of my husband for almost ten years now. I do not want him in a nursing home as long as I can handle it here. His place he build. Please come to visit me, talk to me on the phone but don;t judge me.. I don't want opinions, judgements etc. but friendship, a shoulder to lean on, trust that I will ask for help if needed!
Boy is this familiar! My sis and I put Mom in asst. living six months ago. My Dad was in the hospital at the time(injury she caused) He is very angry with us about it. Mom is late moderate alz. she is agitated a good part of the time. She doesn't know where she is and when Dad visits she is angry that he won't take her home. We did what had to be done. I live out of State, with a terminally ill husband. My sister still works full time. Dad has a part-time caregiver, and is barely able to make it on his own, But still is trying to get aps to let him bring mom home and take care of her! It is like she is a possession to him and he doesn't want to give up his thing. She doesn't even like him most of the time, and the asst. living staff, tell us that she does better, when he doesn't come around. I know he loves her. I know he misses her, But why doesn't he understand that She needs a lot more than he is capable of. Maybe you need to examine your mom's motives. Is this the only thing she has to define her life?? If she is sarcastic and bitter, maybe you should point out that she should feel some responsibility for sticking around for the rest of her family. My Dad, says he loves us, but evidently not enough to give us the consideration of not having to worry about MOM doing him harm again if he gets her home.
I too agree with anonymous. Maybe the family should find a way to give three or four hours a day to help thier mother take care of thier father. Splite the time up with grandchildren of propper age and the adults of the family along with trusted paid care givers. I can understand why your mother is sarcastic if the family is pulling away instead of chipping in. Nurseing homes are dangerous places for someone who can't navigate on thier own. Things happen even if you are keeping a good eye on things.
@knipp I feel for you and am in similar situation. Mom was caring for Dad 24/7. Dad is moderate parkinson patient. They are not rich but have more than enough to hire help or full time cna with the help of all the kids. All of us kids have offered to provide help full time part time whatever help is needed and mom refuses the help. We also offer financial help and they refuse. She also refused to do home repairs because she thought the cost was too high. We had to hire a person to fix the house at half price and then pay him on the side out of our own pockets to get her to fix the house ( or pay code enforcement fines) Dad's lift chair broke and she refused to let us buy a new one because they were too expensive. The lift chair was essential in getting dad around. We had to lie about the cost of the chair to get her to let the chair get delivered to the house. ( at our expense, we said we would pay for the entire thing and she refused when we 1st offered to buy the chair!) Well to summerize Dad had several falls ( that she kept from the family) & a neighbor finally told us that the situation was way worse than they were both were letting on and we got dad into a nursing home. She went along kicking and screaming. It's only been two weeks and she now refuses to visit more than two times a week ( She is 15 minutes away) . Dad is confused and depressed that his wife refuses to come more than two times a week for a little over an hour each visit. BTW one of the reasons we wanted to get him in the nursing home was the social worker assigned to his home health care told the family mom was "antagonistic" towards dad. Now we find out from the NH that mom is "not very helpful" when Dad is having a bad day and has encouraged the children to "not visit dad as often because he needs to get used to the nh" . We are all at a loss as to what to do
It breaks my heart to read the judgements of the children of caregivers. I agree,it is not easy for them either. But give your mom a call, check on the frequent, she needs it more than anything.
That idea of her being a martyr please stop that .Don't let your own guilt become a harsh criticism towards the situation. My husband is 25 years older and suffers from dementia. His children are in denial that he has dementia and just tell me that his difficult behaviour reminds them on how he was as a dad. I know my husband as a loving peaceful person, that unfortunately now has changed and becomes more agitated. It is not OK to dispose from our elders or spouses put them in homes and get them drugged up. We need to discover what the underlying reason of the agitation is. I am furious to see that doctors prescribe medications anti psychotics, that can have fatal side effects. We need to build loving communities where we try to understand the patient rather than chemically restrain them. I would be violent too if I would find myself prisoned in a home...We caregivers, that keep pour loved ones home as long as possible, we are the only advocates they have. WE caregivers are their VOICE and they need to be heard. Is it really that our quality of life becomes better when we can only visit our loved ones in a care facility to see them afraid and scared? Who's interest are we talking about? A big hug for all caregivers.
( 11 years of caregiving to husband with dementia.)
I totaly agrea anonymous I hope I never have to put my husband in any care center but yes it would be nice to have someone to talk to instead of being told wat to do .
Alzheimer's caregiving is very difficult, and it cannot be done alone. One thing that you must know is that the outcome for caregivers is actually not great after they have placed a loved one in a nursing home. There are many studies which have found that the caregiver's stress, depression, and anxiety will actually worsen after placement, even 12 months after the placement. This is especially true for spouses of the patient. So perhaps paid Home Care is a viable solution for your Mother. I think a Nursing Home should be a last resort if there are other measures that can be taken.
Wow, I take care of my husband. My children live out of state. They very seldom call or visit. This was the pattern,before the diagnosed of ALZ. I didn't expect it to change, after all, they are raising children, bills to pay and a home to keep. However, if they plan a vacation, I do expect them to come by, they will still have time to play. I will not tolerate their assuming, they know what is going on, when they do not know and have no grounds to place an assumption on. It would be nice to have them drop in and help out, but it is not expected. I will be the first to tell the little snots, when I think they are over stepping their bonds. My mother in law was placed in a NH, her oldest have power of attorney and his wife decided it was time, we were told after the fact. We went to see her that day and it was as if we were leaving our child at an orphanage (what I think it must be like). All nursing homes are not a good place. I think I might get a little snappy with my children, also. I'm of sound mind and I will decide what husband and I will do. Please just support your mom and if she is snappy ask, DO NOT tell her she needs a break and offer to come and set with your parent or offer to pay for someone to come in, but let your parent help you look for that person. For Pete's sake, the birthed you, clothed you, wiped your snotting nose, etc.. , give them the respect they deserve.
I am there My husband is early alz and I have to handle everything the house, finances, car , bills, doc visits, shopping etc My children do not know exactly what is going on they think I am a rock and can handle anything I get tired but think who is going to do it if I do not. I keep a lovely home and it hurts me when things go wrong I will just keep going on until???????