I'm the 63 year old son of my 98 year old Mom that I have taken care of for over 4 and a half years 24/7. As of the last month, she is now in a long term care facility. Whenever I go to see her, she just wants to know when she's leaving (Blind, Deaf, Dementia and High Anxiety ). The staff say she does better when I'm not there. It's not that she's passed away, but like "once removed " and I don't know what do I do now. Get on with my life? Turn my back for her, and me to accepting she is there now? I hope someone understands...
"Go to walmart or any such store & get a laundry marker. Mark all there cloths with there last name & room number. Use a light color so the ink shows up. This is at first a lot of work but helpful & worth it. Don't by real expensive clothing it may come up missing. My mom's pants would till I caught on. It's ok to let house keeping do the laundry. Get to know the head nurse & all the shift nurses. I was there so much they all thought I worked there. Also get to know the social worker. Never be afraid to say anything. You have to be your parents help. I have gotten one person fired & 2 removed from the floor. Always talk to & listen to your parents. Check there bodies out for unusual marks, brusies, sores & such. There depending on you to protect them & care for them. They can't. There was an aid who was verbally abusing my mom & one who was lazy & neglecting her & one who just showed up to do things when she figured someone was watching. Always ask questions about everything. If your like me you'll figure out what aids & nurses are there because they want to be & love there jobs & those who just need a pay check. After 13 years in the nursing home situation I know quite a lot. Be on a constant alert."
People in glass houses shouldn't throw stones.
and did you know that many here who are advocate for placement in a facility NEVER placed their own parents? Do you realize that they sacrificed their Heath, their personal relationships, and financial well-beings so their parents or spouse could be cared for at home? And that they are speaking from experience and encouraging others not to make the same mistakes they made? Did that ever occur to you? There aren’t a lot of people here who will tell you that they cared for a relative full time and had no life and gave up everything and that they would gladly do it again in a heartbeat.
so please. stop judging the people you disagree with. You don’t know what they’ve been through.
Just because you're right doesn't make me wrong, and vice versa.
And lastly, those caring for severe dementia cases at home are facing danger with the elders potentially getting out at night and wandering. A man I used to take care of did just that and wound up falling in the street and lying there for hours before being found. He passed away the next day from a head injury. I know how badly the family felt for refusing to place him in Memory Care.
If I kept caring for my mother at home just to begin with I would need: hospital bed that folds to the floor, plus thick crash pads all around, so when she rolls out of bed she only 'falls' about 8"; a swing lift to raise her off the floor onto the bed, into her lift chair (which would have to be purchased); bed alarms to alert me when she has rolled out of bed; an additional person to operate the lift, and if mother is in an aggressive mood, a third person to pacify her; a stand up lift to raise her out of bed, wheel her to the bathroom which will have had to have been totally renovated to facilitate transfers to the toilet and shower, again requiring an additional person to aid in the process; medical professionals who can do home visits because mother is so aggressive and disorientated she could not handle the half hour drive to surgeries and hospitals; locks on all cupboard doors so she could not help herself to medications, scald herself or burn a kettle dry; turn the gas on; bar on the telephone so she could not call the police 30 times a day during her semi-lucid hours; locks on all windows so she could not crawl out and over windowsills; deadlocks on all external doors so she could not wander (she sits in her wheelchair and propels herself around using her feet); a chain on the refrigerator so she cannot empty the contents onto the floor in a tidying frenzy; locked doors so she cannot access the study to rearrange files, remove books from shelves and so forth; remove all pot plants from the house to prevent her upending them or tasting them..........need I go on? Yes, I will.
This does not include dealing with choking episodes, aggressive episodes, uncontrollable crying, sleeping almost around the clock then not sleeping for a few days at all; knowing when, and when not, to give pain relief when pain cannot be articulated; fighting her to at least have a sponge bath when she has refused a shower for up to a week; dealt with her abuse, both physical and verbal; tried for hours to get her to eat and drink when she insists she is being poisoned; trying to get her to take her daily meds when she says she does not need them, or the chemist has given the wrong drugs, or I am trying to kill her; locking away the knives because she has threatened to behead everyone; and let's not even go near dealing with her refusal to have her soiled and wet incontinence garments replaced and at least have a cursory wash.
That all would have to be done in conjunction with running a household where I am already a carer to my husband, attending to shopping, financial matters, general household problems, attending to my own personal health issues, medical appointments and so forth.
That, Meg523, is the reality of advanced progressive dementia. I challenge you to deal with that 24/7 let alone for the 15 years you cite. There is responsibility and there is stupidity when it comes to dealing with this situation. The martyrdom that you espouse is not an option.
Just because YOU were able to do the care-giving doesn't mean we all can or even that we should. It is a personal decision, based on many factors, NONE of which means turning our backs on them. We can still care for them in our own way and advocate for them when resorting to using any care facility.
Not that it is any of your business why any of us might not be able to provide the care, and I can't speak for others. I can tell you that most mornings for me are very painful, and often I can't stand straight, bend down, or carry any weight - at my age and with my condition, just HOW do you think I would be able to assist my mother, who outweighs me by at least 30# and won't stand/walk without assistance? My bathrooms are too small to make handicap accessible (and there is no money to change anything) and the only way in/out is a full flight of stairs (with landing and turn, so couldn't even put in a stair lift if there were funds for it.) I did NOT turn my back on her and did the next best thing for her - work out the best care for her. This started with keeping her in her condo with aides, but she refused to let them in after a few weeks. Next was to find a nice MC facility which was closer to me (she was 1.5 hr away in the condo), so I could be available when needed. I took over her finances to protect them, have managed her funds so well that despite having to take a good sum every month for the balance of the rent, it is like it hasn't been touched. I manage her medication orders, buy her supplies and deliver it all. Until she stopped walking, I managed all appts and took her to them. I never took and still take NO PAY for doing what I do. I am there to see that she gets good care and has all that she needs, without having to jeopardize my health and well-being any more than it is already. What do my brothers do? One = nothing. The other has taken over one transport at my request as it is outside the area the facility will cover - 4 times a year to ensure she keeps her sight, but he is not happy about having to do this.
So, until you have walked a mile in everyone else's shoes, keep your opinion to yourself, please. Thank you.
Since it has only been a month, the pleading to go home (and possibly other complaints) are very common. Some do get better about that, some don't. There is nothing you can do to change that! I would not let that be the deciding factor for visiting. For a little while longer, try to curtail your visits (if you were going every day, try every few days or so) or stop by to observe without letting her know you are there. With the latter option, you can see for yourself how she is doing. If she seems to be doing okay, then you just have to get used to her asking you to take her home and find ways to change the subject during your visits. Since she is already anxious, perhaps try a very low dose of anti-anxiety before a visit, OR try visits at various times of the day. Some people are better in the morning and have less inclination to complain/ask to go home. Usually afternoons and evenings can be tough, but it can affect others at different times of the day. If you can find a time of day when she might be less inclined to do this, make that your time to visit!
You've done a great job caring for her. Don't let this get you down. It is common, and has nothing to do with moving her to LTC. Some people even ask to go home and they are still in their own home! Hang in there!
My Aunt had to go to assisted living and she kept wanting to go home. She couldn't take care of herself so it was "When the Doctor says you can, then we will make arrangements". She was almost 90 and mostly in a wheelchair. Finally, after about 6 months, she admitted she needed help with her shower and she knew deep down in her heart she couldn't go home.
I recommend you get a life now. Take a few minutes to decide what you want to do. Do you have a bucket list? Do you need to go back to work? If you don't need to go to work how about volunteering? My husband has Alzheimer's and right now he can be left alone. So I volunteer with the local Sheriff's Department. One of the great things is I don't have to be there at any specific time. For example if you volunteer at a hospital or library they usually want you there at specific days and hours. With the Sheriff's dept, if I have time I can go, if I have something else to do, I pass. Example: Last Saturday night, we had a DUI checkpoint. I was free, so I went, if I didn't want to go, no problem.
Mainly, start taking care of yourself. See your Mom, when you can and be her son, not her caregiver. (((Hugs)))
Question: How often are you visiting mom? Daily visits are probably a little too difficult for her. Weekly visits should be manageable for her. I don't think I could deal with monthly visits.
very much, and if I were in your shoes I could not stay away either. I would
suggest you continue visiting your Mother but less often.
Also, someone else made a good point that perhaps the staff is asking you to stay away because they don't want you to see some of the goings on in the facility. I hope that is not the case but you never know. However, I do know that any facility will make more efforts to stay on their toes with a resident if the family remains engaged.
An interesting thing that happened in the "when can I go home?" period with him. My parents loved to travel and it turned out a train ran right in back of the home, lots of train sounds. He loved hearing the train and began asking when we were going on the train, buying the tickets, etc. For me it became a metaphor for his journey "home" and I think it did for him also. (He was intensely religious, a clergyman.) It became a joyful way to talk about why he was there and where he was going. And hearing the train go by a few times a day punctuated that for him. Happy New Year all us caregivers.
Let your heart guide you. If her constantly asking about when she can go home bothers you, than you have to weigh this against not seeing her again.
Personally, I'd rather have to do the 'white lies' and see my parents/DH again - but we're all different.
Just a thought - but maybe the staff isn't telling you to stay away? Maybe they're trying to explain that she isn't agitated most of the time so you won't worry so much? Again, follow your heart. 63 isn't old and you do have a right to live your own life. But how will you feel regardless of what you decide? Make a Pro & Con sheet and maybe that will help you to decide what to do and be doing.
Bless you. You sound like an awesome son to your mother!
I’d like to add or echo, that YOU make the decision on how often you go, how long you stay. The staff is advising you, and it’s worthy advice because they see this situation more often.. but ultimately this is your relationship and you can feel it out for yourself.
Lately I’ve noticed that my mom’s ‘go home’ thing includes that she has to be ‘free’ - to leave, roam, run, it varies. I can’t help but to be touched by the spiritual undertone! They want release, we’d all want release. Bless them - and bless you advocates and caregivers!
Perhaps my experience might give you some direction. I am currently in a similar situation with my mother in a memory care unit suffering at least 3 types of dementia as well as other health issues. Sometimes she knows I am her daughter, sometimes she hates me, sometimes she ignores me, always wants to go home, but has no idea where that is or what it looks like or even what 'home' is. I live a long distance from the facility but visit every few weeks, meanwhile my siblings visit a few times a week and get the same responses.
After 9 months in care and deteriorating rapidly, we are starting to curb our visits to our mother because, like others have experienced as you are currently, those visits tend to upset her more than being useful. We feel for the wonderful carers and nurses who have to pick up the pieces after we leave.
My suggestion is to start letting go of your mother slowly, make the visits less often if you are comfortable with her care. By all means make regular phone calls to check on her welfare if you feel the need. Gradually start picking up the pieces of your own life, or find a new life if you feel you have lost the old one.
Believe me, there are more people on this forum that appreciate first hand what is happening to you, but will probably not respond. Just know that we do understand.
She always wanted to go home and would beg sometimes it was heartbreaking. I would tell her we can do that I have to get permission, just sit tight and I'll get back with you on that. She never remembered I told her that before. I got even braver with and said you get to go next week, you continue to eat well, like you have been, and they said yes,!! yeah!!! you have done so well.
I'm not taking care of her since my friend now has more help from her family. Last time I was there she didnt know me at all, so I got to be her new friend. :)
It does get a little easier as time goes by. It helps to remind yourself daily that she is where she needs to be, where she can get the best care. I found that the best way to handle that inevitable question at every visit was to say, "We have to wait until the doctor says you are well enough and strong enough."
Prayers and comfort to you in this difficult time.