I am 29 years-old with a great husband, home and one year-old. I am my grandmother's POA and have handled everything for her because my parents are deadbeat drug addicts. Her dementia has recently worsened, not to the point of wandering off, but she has absolutely no short-term memory. She calls me upwards up 40 times a day, hysterically crying because she can't remember where she is - I had to put her in a nursing home. We have a guest room in our basement and she has social security income that could cover a caregiver coming a couple times a week. She would be much happier with us and it's getting to the point where I dread answering her calls and visiting her because she's just so upset. I feel terrible I don't know what to do. I work from home, my mother in law comes over 2-3 times a week to watch my son. I could realistically have her live with us, we have the space, but my husband is vehemently against her moving in with us and thinks it's way too much work. I just don't know what to do.
If you are still on the fence thinking you could easily take care of Grandmother and the rest of the household here's an idea..... spend 24 days each at the nursing for 3 days.... usually when there are visitors to see someone who has dementia, that patient some how are able to be very social and sweet, but they can't keep that up for 24 hours straight.
By you spending 3 days straight in the nursing home, you will get a first hand look at what all needs to be done.
I ask this because I was brought up to believe that family always cares for family and that placing a family member in an institution is just "wrong". So...... as my parents aged I moved half way across the country to be near them and care for them. I intended to stay a couple of years; it ended up being 20 years. After they passed, I moved back to the area I loved, but had lost contact with most of my friends.
Lessons I learned: (1) First and foremost it was the right thing to do and I would do it again, but that's because it was my value system. (2) It was HARD. (3) All my free time and energy were focused on my parents. (4) I was able to work, but only part time and I did not have the emotional energy to put into making new friends because of my commitment to family.
Being primary caregiver/caretaker is one of the hardest things people do. It is even harder when dementia is involved. For me, it was a tremendous sacrifice and unless you and your family are totally committed don't take this on.
Her in your home will cause nothing but chaos, resentment
and endanger your other relationships. You will be
tied down..she will regress as your child gains more
Skills. Visit often. Work with the staff and please, don't
feel quilty. You are to be commended for being her advocate. Good luck!
1. Does the basement have an easy way to get out of it? If it is a window egress she will probably not be able to climb the small ladder that is supposed to be used.
2.Is it easy for her to get into and out of the basement now? She will begin to have problems with stairs so you will probably have to install one of the motorized chair lifts.
3. Is there a bathroom in the basement? If so is it large enough for a walker and later a wheelchair? Is there a shower that does not have a step to go over to get into it? Trying to step over even a 1 to 2 inch edge when your balance is not great or when you are wet and the floor is slippery is dangerous.
4. Is there carpet in the basement? If so that poses a trip hazard and it is not easy to push a walker over carpet.
5. The lighting will have to be improved. As she begins to "sundown" lighting is important as well as just having poor vision. And with many forms of dementia lighting is important to help discern floors from walls and to tell where thresholds are.
6. Social Security check will not be enough to provide caregiver 24/7 when it is necessary. So I am guessing you will take up the slack. And probably at night. You have a young child and you need your sleep, in 8 months, 9, or 24 you will be up at all hours tending to the needs of your Grandmother. (And probably doing an extra1 or 2 full loads of laundry every day just for your Grandmother) If you were to have asked her 10 years ago would she want you to be putting her before your family and children I am sure she would have said no.
These are just a few minor things that you will have to consider.
One of the important things is how this will effect your marriage. You also have a young child to consider.
This is a full time job you are considering and not just a "9 to 5" job but a 24/7 job.
If all she has is Social Security help apply for Medicaid, you can do this with the help of the Social Worker at the Nursing Home she is in now. They need to know that although you would love to take her in you can not possibly do it at this point in your life.
Look for a facility that will take her.
You can be a loving Granddaughter and not the tired, sometimes angry caregiver.
Your heart is in the right place.
In your head I am sure you know that this idea is full of pitfalls.
Let your head rule over your heart.
And as strange as this sounds use this as a starting pint to talk to your Husband about your future and his. Play the "what if" game. Would you want your daughter to have to care for you if she has a young family? Would you want your husband to spend 24/7 caring for you? Would he want you doing the same for him?
Look into Long Term Care insurance.
You've gotten a lot of good advice here. I agree with most of them that taking your grandmother in is something you would regret. You sound like you have a great big heart. Who wouldn't want that in a granddaughter? But your husband is correct on this. It would be a lot of work. You have your child and husband and personal "sanity" (!) to consider. Not only that, your grandmother will be safer if she has the 24/7 care she probably needs. If she is calling you at all hours, that is a big sign that she needs an even higher level of care than she is getting now. My mother (mild dementia and physical problems) needed to exit a rehab facility and go into assisted living. It was a hard situation, as she was resistant and wanted to go home (couldn't). I briefly considered taking her in to our home with my husband and myself, but knew she would be in a better situation in an ALF. We are senior citizens ourselves and were both working. Mom is very social and needed people around her, plus she needs daily care and attention. Also, she and I always got along like oil and water, and it's an understatement to say I was not her favorite person at that stressful point! My husband was adamant against her coming to live with us. Weighing everything, an ALF seemed like the best consideration. It took a while to get the finances straight, but we managed with the help of a good elder care attorney and the state Office for the Aging to apply for Medicaid, etc. Mom is in a place she really likes, she has "friends" around her, and overall her care is good. I can sleep at night knowing this, and I see her twice a week to make sure she is OK and has what she needs. It was a much better decision. Mom and I have a much closer relationship now, which is great. Consider everything, have her assessed by professionals, and remember you first need to be there for yourself, your child, and your husband.
Very thoughtful of you to think about caring for your grandmother, but we can promise you that in time you will never regret keeping her in a community that can best meet her needs. Do not sacrifice your immediate family's we'll being to this insidious desease.
Plus as I understand, people with dementia can grow mean. I am fortunate that my mil has remained her same old sweet self. However, I have changed. I used to adore her and now I just consider her an extra chore. That is an awful way to feel but I cannot help it. I have lost privacy, freedom, and the ability to relax. It is very stressful.
I urge you to act on your compassion, but in a way that is best for everyone. Visit her often. Bring her or send her little gifts. Bring your baby for her to see, if she would like that. Be her advocate (if your parents or someone else is not already playing that role). If she seems so anxious she is calling 40 times a day, talk to the director of nursing about what can be done to help the anxiety. Also block her calls, to protect yourself, but try to help grandma, too.
If you can visit at a time some activity is going on, perhaps she will do it with you, and then maybe do it next time when you are not there.
There are many things you can do to improve your grandmother's life where she is. I wish I had known that and and acted on it for my own grandmother.
You can never leave her alone... Never. My husband and I care for my mom with Alzheimer's. He and I made this choice together and we take care of her together. Earlier on, I could do most of it alone but as she progressed, I needed more and more of his assistance. She went through many stages along the way...some nice, others quite challenging.
She is now at stage 7. My husband and I rarely go out together...but we do spend lots of time together at home. We have to take turns going to weddings, bday parties, etc. One of us goes, one stays with mom. Mom is cannot walk anymore, actually she can't even sit up without support. She is a dead lift to get her from her bed to wheelchair to recliner. She is double incontinent, so we have to change her every 2-3 hours. To prevent bedsores, she has to have her position changed every 2 hours. She can not control her hands so we hand feed her and give her drinks. Her legs are contracting, stay bent, so it makes moving her even more challenging. She has a delayed swallow so we have to carefully watch her as she eats and drinks so she doesn't choke. My mom sits and rambles verbally all day... It sounds like she is yelling at you but I think she is just working so hard to try to tell us something. It breaks my heart.
Full-time caregiving is extremely time consuming. I would not change my decision to care for my mom but do not think it is doable for all people. I certainly would not have done this without the total support of my husband. Read up about what all is involved and only make a decision that both of you are ready to support.
I have my 94 year old stage 7 Alzheimer's mother (end stage before death) living with us and we are barely able to keep our heads above water! You two are way too young to have your lives irreparably disrupted. You would be doing your 1 year old son a huge disservice. Mommy would be too busy with grandma. He would have to vie for his mother's attention because "grandma needs this or that". That's just wrong. To have a dementia victim in your home is like having a child but one that doesn't learn and can't be reasoned with, their behavior only gets WORSE. You will have to have eyes in the back of your head and, even though you are young, having her there will take a huge toll. She also could potentially cause a dangerous environment for your small son with her confused behavior.
In the end stages of dementia you will be feeding her, changing diapers, bathing her, dressing her, walking with her to make sure she doesn't fall. Every need will have to be taken care of by you. That should scare the begeebers out of you!
You say you work from home-well, forget that. Is your mother-in-law going to watch your grandmother too, so you can work? See, this arrangement WON'T work.
You will be SO tired that your relationship with your husband will suffer. You won't have ANY time for him because you'll be trying to divide your time between your son (whom you SHOULD be interacting with) and your grandmother. Hubby will become resentful and start to back away from you, believing that all this is your fault. It's hard to regain the intimacy that you once had.
Compared to you guys, my husband and I are old (late 50's and 60.) We've been married 10 years. We have more life experience than you but we are having a most difficult time managing this family situation. Mother screams out any time she feels like it. She becomes combative when things don't go her way. This is not unusual behavior for late stage Alzheimer's. Don't forget that dementia is ongoing, it only gets worse. THEN what? Put her back in the same nursing home that she came from? I can tell you from experience, they DO NOT adjust easily to changing residences (or any other change, for that matter). She will "fit in" in about a month and a half.
Read the book; The 36 Hour Day, A Family Guide to Caring for People Who Have Alzheimer's Disease, Other Dementias and Memory Loss, by Nancy Mace and Peter Rabins. Your hair will stand on end! I'm telling you, there's a big difference changing the diaper of a 1 year old and changing the diaper of an 80 year old who is screaming obsenitites at you in the bathroom as you're trying to clean her up. THIS will be your life. Is this what you want your toddler to see?
Last thought; Do NOT go against your husband's wishes. What if he won't help you? You WILL regret it. This time, he is right. He is considering the impact on his family and has found it to be too stressful. Smart man! DON'T sacrifice your little family's lives for an old woman who will adjust to the nursing home in time. You did the right thing by placing her there. You're a good granddaughter. God bless you for caring and stepping in for your (sick) folks.
Talk to the facility to limit her phone calls to you to a couple of times daily. If not possible, turn your phone on silent or block her for the hours you would be doing other things. Dementia victims WILL manipulate you to get what they want.
I believe your thinking is motivated by guilt for placing her there. Your child is too young to manipulate you yet but kids play that game too. If she begs hard enough and long enough, you'll cave and give her what she wants. You've got to be the adult and stand your ground (with grandma and later, son) when you don't believe what they want is in their best interest (moving in with you or a big candy bar). Life's hard and sometimes you have to be the "bad guy" who says "no". Hang in there.
1. Safety. Unless the basement has a walkout option, available bathroom and kitchen, and is insulated, heated and air conditioned, she'd have to be climbing stairs every time she needs something that's not in the guest room. If it's not a hazard to her health now, it could become so as she ages.
2. In addition, there are certain code standards for living space in the basement, specifically, window escape access in the event of an emergency.
3. If an emergency were to occur, do you think she'd be able to use the escape window? People tend to become frantic in emergency situations and her dementia might spike and confuse her even more.
4. She's now confused as to where she is. Another move to your home, even with you there, might increase the confusion. It's entirely possible that the confusion as to where she is will continue if she moves in with you.
You've obviously in a difficult situation, especially when your husband disagrees. And unfortunately when dementia is involved, situations don't get better.
Do have grandma evaluated to see what might be done to make her more comfortable where she is.
She isn't going to "improve" as she ages and having twice weekly care isn't nearly enough. You will get dragged into it and you'll come to resent it, and her. Dementia patients can't be reasoned with, so you'll spend a lot of time with your 2nd baby. I know this is hard, and you already are doing the best thing you can for grandma. Bless you for stepping up!!