My mother had a stroke Feb. 15. She has been in hospitals and now rehab. She is not making progress and rehab will stop soon. She cannot walk. Is confused at times (not always), and needs lots of assistance. Every time I talk to her she says she wants to come home. I am devastated. I do not know what to do. Everyone tells me that I could not take care of her. My brothers think she should go into nursing home. I am so close to her and feel helpless and guilty.
i understand your feelings of guilt. It comes from wanting her to be well and whole. Unfortunately, you have no control over that part of her life.
the real question may be, how guilty would you feel if she came home and you couldn’t give her the care she deserves.
Reassure her that you will be there for her and that you’re not going to leave her. Be involved in her care and take care of yourself so that you can be there for her.
God bless.
No one I’ve ever read about on this board has ever said they enjoyed putting a loved one in a facility. The most difficult thing about it is being realistic. Most of us caregivers are not medical professionals. And, even if we were, it’s different going to work, putting in your hours with patients you are not related to and then going home. When you care for a family member, you are on-call 24/7/365. Even if the person you’re caring for is pretty easy-going, like my hubby, there are still the 3AM potty calls, the continuous washing, changing, wiping, fetching food, drinks, and the worst is worrying about a medical emergency and that you will not know what to do.
You mom, like mine, if she is becoming confused and may be suffering from dementia, may want to return “home” to the place she grew up. No Senior Citizen who has perhaps lived in their home for decades is happy about leaving, admitting they need help and counting on the kindness and personal care of people they don't now. They often react with anger and put the blame on the nearest person. This person always has doubts and feels guilt. But when we realize that if we did take the loved one into our home, we would be doing the work of three shifts of caregivers around the clock, acceptance comes easier.
I hope you and your brothers and the “everyone” you wrote about will sit down and speak frankly about your mother's needs. Offer your thoughts and listen to their’s. Sending you good vibes. Come back with updates. We care.
While she is in rehab, have her evaluated for Long term care. If there is a nursing section in the same building, then she could be transferred over. If not, start looking and visiting NHs in the area. If she has no money apply for Medicaid.
Think hard before u take on the responsibility for her care. Its like having a baby. Your life is not your own.
Yes, I am 64. I am married but have no children. My mother was pretty independent prior to this stroke. She was able to live alone until 93 because I went to her home every morning until noon since her second husband died. 7 years. I know she is looking to me to help her. It is heart wrenching. And she has hung up on me twice after I told her I cannot come and get her. The added stress of the coronavirus and no visiting allowed is making this transition very difficult and painful. I have looked into 24/7 In home care and we cannot afford it. I truly appreciate your response. I am getting the same one from everyone I ask. I wonder how many I need before I will accept what must happen!
you make an excellent point, how guilty would I feel if she came home and I could not care for her.
thank you for your thoughtful answer. I needed this reassurance as a decision has to made very soon. I love this forum and am glad I sought help!
I too have been struggling with guilt and sadness since this virus caused my Mother’s AL to go into no visitors allowed. She has Parkinson's and dementia. It is so hard to not physically see my Mom everyday right now. The face-time by phone is so short.
Even though I want to bring my Mom home and take care of her, I know that I cannot physically do it 24/7. Also, if I caught the virus, I would not have any backup. My Mom would not want my Husband and boys taking care of her bathroom needs.
Know in your heart that you are doing all that you can to keep her safe right now. Be as supportive as you can to the staff that are helping her.
Both you and your Mother are in my prayers!
Life has changed & I want to tell you there will still be good days. You can still love your Mum, bring her a hug & smile, her favorite treat, sit in the garden, watch TV, spend time together - no matter if she lives in her home with Aides, your home with Aides visiting or a Nursing Facility. Just tell her you love her. Home will be where love will be.
Both my brother & I hated to have to place her there. Prior to this episode mom used to sneak out of the house at night to feed the animals her leftovers and also almost burned down her apartment by leaving hot oil on the stove & forgetting to turn it off. She had moderate dementia that was getting worse by the day. She would argue loudly about everything.
I coped with my decision by constantly re-affirming to myself that the NH was the safest place for her to be. Neither my brother nor I could meet her needs as far as supervision. The hospitalization that prompted this placement was for a fecal impaction; came to find out mom hadn’t moved her bowels in 2 weeks. She passed away at 89 & only had to be at the NH for 14 months. She had a stroke and then another a month later when she passed away on hospice at the NH. I was there.
Try and make yourself a mantra of “safety first” when making your decision. Her safety living with you at home will be your responsibility 24/7. You cannot in reality provide that. Plus physically at our age (I am 62) it’s a lot for one person. It will all be on you.
Putting my mother in a nursing home was the most difficult, gut wrenching decision I have ever had to make in my life so far. I felt enormous guilt every day as did my brother. But realistically it had to happen.
My mother’s brain was broken as she was self sufficient and independent and worked until she was 72.
No doubt your mother taught you that there will be hard decisions in life that have to be made. You are making that decision now for you and your family.
Under different circumstances she would be proud of you sticking up for yourself your family.
It’s a hard decision. I wish you clarity & good luck. Either way there will be plenty of tears. I cried so much over it too.
Your story is my story. My Mom had a major stroke at 90 leaving her completely paralyzed on her right side. It was nothing short of a miracle that she survived let alone RECOVERED mobility. That was 6 yrs ago.
She was in Rehab for at least 2 mo if not 3 and worked diligently in Rehab as well as OT to the point of tears and begging to come home alot. The Rehab dept was excellent but the nursing end of it was definitely sub standard. That was difficult.
Unlike you tho I was able to be with her everyday encouraging and yes pushing her thru Rehab. I told her she could not come home unless she could walk and I knew she could do it and together we would get thru this. She is of Finnish descent and a tough and tender lady; my very best friend and sweet as pie.
I was able to bring her home. It was the hardest job I have ever done; the best of times and the worst of times that I will never regret it. I had aides for her during the day...I took the nite shift. It was expensive temporary as Mom returned to baseline and was able to be alone as she was prior to the stroke. We were so lucky to have achieved what I feel you want to do for your Mother right now. As others have said it was not easy. I am single also. Had I had a family it would have been a very different story.
I think now the focus for both you and Mom should be the hope of recovery. If you decide to bring her home or she ends up in LTC recovery will serve her well either way. It really is what you both want right now so give it your best shot. She has to put in the work. Do not skip the all important step of healing.
Reach out to PT and OT....get their names ...find out exactly what exercises your Mom is doing and what activities she is doing in OT. Encourage her on Facetime and thru letters that you "met" so and so in Rehab and they seem really nice and does she like so and so etc etc. Talk about her activities and hope for recovery. Try not to stay in the negative for too long. Make it clear she cannot come home unless she can walk or whatever your criteria is. That was mine...I knew I could not mange her non ambulatory.
The answers you are seeking by and large depend on her recovery. In the meantime you both have work to do. You must prepare the home with grab bars a higher toilet seat etc. Thats the easy part and will add value to the home in the long run. Take your time. You can look on line...most hardware store are open and will deliver curbside. Let that be your discussions with Mom also....that you too are working hard to get her home. The ones I put in Moms bathroom look like high end towel bars.
I know you want to know right now what your decision will be. I think the answers you seek will depend on her progress in Rehab and that will take time... with COVID19 maybe even more time.
The very best of luck to you and your Mom in this journey. Please reach out to me with any questions you may have. I am here for you okay? xxxooo
I moved my Mom in with me (my Mom suffers from Alzheimer's and dementia). She is 94 now and I don't regret taking care of her for 1 second. I have given her sponge baths in her bed after she dislocated her hip, etc.
I wouldn't listen to your brothers and others because you know yourself the best. If you don't think you could handle it then look for a place to her.
It's a lot of work and some people are cut out for this kind of work where other's are not. Just be honest with yourself.
Best to you!
Jenna
So, remember that sometimes we are able to do everything right and people still react only viewing the situation from ‘their’ perspective. It would be wonderful if all people could see the other person’s view too.
We don’t live in a perfect world because people aren’t perfect. We have challenges that we face that make matters extremely difficult. Most of us are all trying our best. How can you possibly do more? You care very much but you can’t snap your fingers and make your mom’s problems disappear.
Plus nothing is normal right now. Nothing! So, we cannot pretend that it is. We are all adapting to this situation. Our stress levels are higher at this time. I’m so sorry that you are struggling with all of this.
like my attorney said, lets get her in safe place and hopefully with more time she'll progress and yes, be able to come back home if it seems like it will work... so keep that in mind - she may progress and you can honestly evaluate situation and decide that you can mange ...believe me , im racked with guilt too. my mom only family i have, shell be 91 soon and moved in 9 years ago help her out, each year shes become more dependent on me...before this foot infection she get around with her walker, bathe with chair, had meals on wheels, she was quite independent in her home but homebound but always tried so hard not be burden...so yes, the guilt im feeling is overwhelming-but for now, it about her safety and well being..not my guilt,,,big hug to you
Work with social services to get mom placed in facility that can meet her needs. She will likely be in quarantine for the first 2 weeks - if in a new place - and have limited contact while COVID-19 pandemic is still a problem.
Find creative ways to stay in touch. Send goodies, lotion, perfume, pictures, letters... Call several times a week - not daily. Stay close in every meaningful way with social distancing and keep telling yourself, " Mom is here to get the care that is too difficult to get at home."
Her hanging up on you is manipulation to get her own way. Don't buy into it. No one is going to be happy with the situation, not her and not you. It is so difficult to make the decision that you can not safely care for your loved one and they must go to a facility. It sucks, but I promise you that you will get over the feeling of guilt when you come to terms with the fact that she is safer in a facility and has 24/7 care available. Just don't buy into her attempts to make this your fault because it is NOT.
I bawled like a baby and felt terrible about my dad. I kept telling him that it was up to him how long he stayed, work hard and get better then you don't need care. That put all the responsibility right where it belonged, on him. He did work hard and he now lives with his 3 dogs and is happy. The thing was that he had to be able to do it. Me propping him up was not him doing it and I refused to give up my life so he didn't have to do something he didn't want to.
I read time and again on this forum how parents have imposed on their adult children so they didn't have to change anything but they are willing to steal their children's lives for their own selfishness. Please don't be another one that has no life because of a stubborn, selfish, self-centered parent that doesn't care what it costs you to accommodate them and their desire to not have to change.
It is so hard. I hope she soon accepts her limitations. I hate this for her but she had a stroke and is 93. I have been an excellent daughter. And this is how I can care for her now. Oh thank you so much. Your answer was a Godsend.
Sure, it’s easy to say “hire someone” but is that going to be easy to do these days and let’s face it, it is bigger than a one person job, so you would need to hire 2 or 3 people. Could she realistically afford that?
Everything is harder these days. It would certainly be more practical to place someone in a home with a complete staff. Again, that can’t be helped. None of this is your fault and I know that I am not telling you anything that you have not been thinking about yourself. That’s why it is so hard to know what to do.
Are they short on staff? Some nursing homes always have been. I’m sure it is far worse now.
As far as her being manipulative or selfish? The OP has not expressed that being the case. Some people are that way and some are simply scared, fear of the unknown which is completely normal. Transitional times are hard. So, I totally get that you are concerned about how she feels. Anyone with a heart would be concerned.
I am so sorry that you have to deal with this situation at this very difficult time. Having said all of that, as I said before, if you cannot care for her there is nothing else that you can do so please try not to feel guilty. I am sure you are doing the best that you can.
Take care. Be safe. Best wishes to you and your mom.
At least you don't have siblings pushing you in to a difficult situation. Now you have to make a decision - seeing her current needs and level of care, can you physically do it or not.
Hospice is GREAT and will be a big help but they are not there 24/7. Normally you can ask for a Volunteer that can sit with mom while you run errands or just have some "me" time but Volunteers have been cut back since COVID19.
With Hospice you can get a Hospital bed, supplies and equipment that you need and you will have a Nurse that will come once a week and a CNA that will come 2 maybe 3 times a week to help bathe and dress mom and change the sheets.
The bulk of the work will be done by you or caregivers you hire (mom pays for them if possible with her funds)
You could do a "trial" and give it 3 or 4 weeks to see how thing go but if after the 3 or 4 weeks you feel that you can not SAFELY care for her (and that safety is her safety, your safety both physical and mental) then you can look for a facility that would be a good fit. That might mean Memory Care or a SNF (skilled nursing facility aka Nursing Home)
But you have to be honest with mom and tel her that if it is not working out that she would have to go to a facility where they can meet her needs.
You could talk to the Hospice Social Worker about it and they can help find a facility that would work.
If you decide to not use Hospice then you have to get the equipment into the house before mom is discharged, the Rehab where she is can help arrange that or her Primary doctor. But that also means you will not have the help of a CNA. And the wealth of information that comes with them educating you and the family how best to care for mom.
And that brings me to another question...what does your immediate family think about mom moving in...not just that you could not care for her but that she will be a resident of your household and a lot of your time will be focused on her. And do not count on your brothers for help as they have made their opinion known.
People do not understand why her grief is still so great after 20 months of losing her husband and they are quick to sign her up for 'caregiving' someone else. Her grief is tied deeply to the fact that she lost herself and was looking forward to having a normal life.
I have never met anyone who did caregiving so "patiently, lovingly etc" but it took a toll on her. Ideally, if money is not a problem, keep her in her home. If however, the family's decision is a nursing home - then do all you can to have routine visits and be for her there.
Every family has a different dynamic and a different solution. The reason I told you about my dear friend is that she gave, gave, gave, and gave. Fortunately for her, she has a loving son (married w/kids) and they make sure she is part of their lives.
May you find the direction in which way you go. My daughter told us when I turned 50 to make sure we understood she never had any intention of ever helping us as we got older so don't even think about that. So, she won't experience your anxiety. Take care of her, love her, and spend time with her whatever your decision is. Love goes a long way...............
if only this covid was not playing a part in our lives. I THINK if I could visit it would be better. Anyway, thank you. I needed to hear this!