My husband is insisting that his father move in with us. FIL has parkinsons (stage 3) and is 76 yrs old. I have my own health issues (not debilitating) and feel very strongly that I do not want to take on the care giving role. We are in our late 50's, kids are grown and on their own. This is supposed to be OUR time, while we are still able to enjoy life. Husband has done NO research as to what it's going to take caring for someone who'll end up bed ridden and needing 24 hr care. What I'm asking of this forum: Please respond with honest answers as to what it's like caring for a parent with limited mobility, and/or caring for a parent who needs 24 hr assistance (which will be the case in a few years) so I can have my husband read some honest input. We both work, husband has a very stressful job that often runs overtime. I know husband would feel guilty if he had to say no, even if the stress affected his own health. I've mentioned that FIL could out live him, then what would I do? Help!
Your own health will likely be compromised, and dealing with his limited mobility may very well cause back injuries. You'll be faced with the choice of continuing that unhealthy (for you) care vs. not doing it and feeling neglectful, if not guilty.
Depending on how much stress is developed, you may find your attention span limited and your ability for analytical thinking compromised, affecting not only your home life but your job. Attention span can become shorter; decision making is more difficult.
I see no way that anyone can work and handle 24/7 care w/o hiring support staff (private duty) to provide most of the care. And that's a major concern - finding competent, reliable support staff.
I've just gone through a brief stint with private duty and don't want to go through that again. I wasn't prepared to deal with people of limited capability, limited motivation yet the arrogance of feeling superior because they were being paid for caring for someone. And I hired people from a top agency with a good reputation.
(I think the issue is primarily that the quality of the people depends on the holder of the franchise, and the competitiveness in the area.)
Out of 3 people, only one was really qualified, but smoking was an issue.
Don't do this; it'll literally ruin your life b/c it will affect every aspect of your life, including your privacy.
If your husband is insisting, be prepared for some serious friction between the two of you, to the point that you might consider leaving him before compromising your life (seriously). And you will become very resentful as he expects you to do most of the work, especially since he works overtime.
And, looking at the situation from another point of view, your husband's naivety is not the best way to start a caring situation for his father, who may eventually feel unwanted, or resentful of the situation.
I don't know how your relationship is but, you will give up your life, your privacy and maybe your marriage as your wife does not think it is a good idea. Listen to her. Women typically end up with boots on the ground doing all of the hard work. So if you want to loose her, bring dad, but if you cherish her and your marriage find a good facility that has age in place, that way dad can stay at the same place as his needs increase. This will give you the opportunity to be a son and friend not a caregiver, not the one saying, did you poop in your briefs? Really dad it's been 4 days since you put on clean clothes, you have goober all over your front. Dad you need to shower it's been 10 days and you keep saying tomorrow, you are smelling up the whole house, you've pooped in your briefs 5 times this week and I can tell you haven't cleaned up well. No dad that's not toothpaste it's hemorrhoid cream. What's in your hair it smells like peanut butter. Why do you keep yelling it's 3am, I need some sleep. Sorry honey, I know it's your birthday but dad says he can't be alone right now, maybe next year. I know I've said that for the last 12 special occasions but I can't just leave him. Why do you keep calling me, I've already told you I'm in meetings all day, I can't come home and fix the remote.
These are your days and nights to come if you don't let professionals take care of him.
Being his advocate and visiting allows a healthy relationship to be maintained, unless dad is a narsisist then run don't walk away. I am just giving my experience and my dad is in AL. I can't imagine if I couldn't leave and have my space and my family that doesn't revolve around my dad. He is not happy with it, but he is the one that failed to plan.
May God give you the wisdom in this very difficult situation.
*He can NOT make a decision for YOU. He does not have that right. He can take care of his dad (somewhere else) if he chooses but he can't MAKE you perform as a caregiver when you don't want to. Your husband can't insist YOU perform the duties when you're not up to it or don't want to, especially if your health issues will get worse.
*You have done your parenting job and are now on your own. We all expect to have some "alone" time with our spouse. When a person moves in with you, it changes the whole dynamic. When they're sick that makes it worse. I can speak to that because I brought my mother (94 years old, Alzheimer's stage 6) home because my husband wanted her to live with us. (I didn't). Long story short-it really didn't work out. After 3 months she returned to the Memory Care facility (where she is happier and so are we.)
*If you are "forced" to do this, your marriage will suffer. You will be resentful towards your husband for putting you in this situation. You will have more "disagreements" and be angry more often. FIL moving in WILL have a negative effect on your marriage.
*Your husband is making an uninformed decision for both of you because of guilt. He will feel bad by refusing to have him move in. He doesn't want to say "no" to his dad because he thinks it will upset by his dad that he doesn't want or love him. That probably isn't true.
*How do you expect to take care of FIL? You both work full time and hubs puts in a lot of overtime. WHO will take care of his father when you guys are commuting and working? Would one of you quit your job as the Parkinson's progresses? (because he'll need more and more care.) Can you afford that?
*From experience, I can say that I felt a whole lot better in my fifties than in my sixties. I've had previous back injuries (nurse) and they have flared up more as I get older. It made caring for my mom very difficult. She needed assistance to stand and I had many painful nights. Arthritis cropped up too. We're not getting any younger.
*You will have to coordinate caregivers schedules and take off work when they don't show up or are sick. In the years ahead he may need 24/7 care. You may have to physically clean your FIL or leave that job to hubby. But what happens when he's incontinent of bowels and hubby is at work. You have to do it. Are either of you prepared for changing adult diapers?
*Since hubby already has a lot of stress at his job, his home should be a refuge. But that's not going to happen when his dad demands more of his time (and you're getting less). The stress will be off the charts.
*It's been quoted that 40% of caregivers die before their loved one! That is not a good statistic.
Can you tell what my opinion is?
P.S. Don't do it!
Don’t let him move in. I can’t tell you how absolutely draining it will be and it’s not even your father. Bless you!
Here is what our life is like. First, we rarely get to go to an event together. We usually take turns, one goes to the 1st half of the birthday party, the other goes to the 2nd half. We do occasionally go to some events, but we have to take mom with. That is an involved process, pack up all needed supplies, load the big reclining wheelchair (mom can't sit up b anymore), lifting mom into the car (she only weighs 70 lbs but she's frail so it requires 2 people), and others in attendance have no to be okay with her verbal ramblings... Incoherent. This works with our family and Church events, but not so well for school events (then only one of us can go).
Mom has been totally incontinent for about 2 years. Two years prior to that she needed total assistance with toileting. Because she is immobile and has constrictions, I really requires 2 people to change her. I can do it alone when I have too. She has to be changed, cleaned, ointment applied, etc. every 2-3 hours. Because she is basically bed ridden, we have to take numerous precautions to ensure she doesn't get pressure ulcers (bed sores). We have a hospital bed and a recliner. Both have alternating pressure air mattress pads. In addition, we shift her position every 2-3 hours.
We feed her foods high in healthy fats and protein.. This helps keep her skin healthy. It takes about an hour to feed her each meal. She lost control of her hands over 2 years ago so we have feed her. She doesn't open her mouth very wide so I use a shallow child's spoon. This also makes brushing her teeth tough. She drinks ensure plus too.
Some other tough things about caregiving...
All the supplies and equipment, from shower chair to bedside commode... Disposable briefs to ensure
Bathing issues
Hallucinations and delusions
Sundowning
Lack of sleep when mom is up all night
Dealing with critical family members or frustrations with their lack of caring
Worst of all is the day to day stress of watching someone you love disappear before your eyes.
I love my mom and can tell you many of the wonderful parts of caregiving too but I don't think that is what you were asking. Is it tough work, yes it is. Can everyone do it or want to do it, no. Only the 2 of you can decide and you must do so together. Much luck to you.
The physical demands of caring for someone with PD are daunting. Dementia brings that to a entirely new level.
While your husband is learning about Parkinson's Disease, he had better look into Parkinson's Disease Dementia, too.
When Dad’s need for care becomes so great that one of you has to quit working to care for him, will it be your husband or you?
If he feels guilty not inviting him into your house now, think about the guilt of moving him into a care facility after he’s lived with you for a while ... and how hard it might be to put your marriage back together.
Remember when the kids were young and they wanted a pet? They said they would take care of it and begged for a pet, and who REALLY ended up taking care of it? You did. How about when the kids were little and got sick, who stayed home and took care of them? Who is really going to be getting up in the middle of the night when Dad needs care? Who is going to be doing all the laundry when bedclothes get soiled? Who is really going to leave work to take Dad to his many medical appointments? Who is really going to call out of work when Dad is ill or injured and needs someone to stay home?
Here’s some stats: Upwards of 75% of all caregivers are female, and may spend as much as 50% more time providing care than males. [Institute on Aging. (2016).] Male caregivers are less likely to provide personal care, but 24% helped a loved one get dressed compared to 28% of female caregivers. 16% of male caregivers help with bathing versus 30% of females.
And if you hire caregivers, be prepared to go through a few before you find someone you really like and trust. (My MIL had a wonderful CNA coming into the house for several weeks after a hospitalization, we all loved her. Then MIL mentioned that the CNA would help her into the shower, leave the bathroom and close the door (in the first place, she was supposed to be supervising the shower), and MIL would find things moved later on, like handbag, things on and in dresser (then we had to make sure all of her jewelry was there, valuables, etc., get a safe box and lock stuff up.)
Bottom line ... if you both are not 100% in agreement (and it’s obvious you are not), then it will NOT be a good experience. You will end up resenting both your FIL and your husband for putting you in that position.
Your wife took no vows regarding your father, what you are doing is a lethal mistake to your marriage. Your priorities in order are your wife, your kids, your father. Keep your priorities straight.
I had my mother in our home twice after spending a fortune making changes to accommodate her. During those times she actively tried to turn me against my wife. When I saw what was happening it still didn't register until my wife gave me an ultimatum.
The care giver role is all consuming, give up hope of a happy life with your wife and family until you come to your senses.
How will you get your father out of the house in case of a disaster or fire? Where will you go? In AL living all of that is pre-planned into the building for his safety and there are people awake 24x7.
Private care is expensive and difficult to manage, community care is a sharing of resources that is much more efficient and cost effective.
Finally, you will lay awake at night trying to figure out how you could have been so stupid. The tension in your home will eat at you until you can't take it anymore. Listen to the wisdom of those of us who have made mistakes, make the right decision for all of you and start looking for a nice AL nearby.
Now the question is, are you prepared to lose your husband over this? I have seen the ending results of Parkinson's and you will wind up having to do everything for him. You will become a 24/7 slave to his every need.
I'm not saying he won't be grateful - but the fact you're asking tells me, this is not in your cards.
I care for my mom who has dementia the last 7 years.
Your hubby may not realize the type of 24/7 job this is and many family dynamics will change, surface and go ugly.
If you do this that “US” time is over.
Maybe bring FIL over to your house for a weekend as a test-drive. Cancel all plans; hubby needs to be with FIL.
I won’t even go into hallucinating (happens w Parkinson’s), meds or the rest. Try a weekend.
God bless all caretakers and nurses, truly angels on this earth. Please keep us posted on what happens.
He could not be left alone the few times I drive to the grocery store 3 miles away I was a nervous wreck. Even though he lived with us for 4 months my sleep schedule never returned to what it was as when he got up to go to the bathroom I would wake and make sure he went and came back to bed okay. He didn’t need as much care thankfully but it was still stressful. Now that he is wheelchair bound our house would never work with all the steps.
My sister-in-law took her father in. He had Parkinson's. My brother did help with his care. Her father stayed in their house until they moved him to a hospice center, where he died 4 hours later. She does not regret taking care of him. And, one thing he said to her before he died was, "You did good."
If I could move my Mom to my house, I would. But, we have too many stairs. Plus, Mom is happier in her own home. Providing care can be frustrating at times. But, I don't have anything else I would be doing if I wasn't taking care of her. (Except maybe taking care of my sister, who has MS....)
When I need a break, I pay someone to fill in during the day. I do have help coming in at night, and palliative care an hour per day. So, there are options if you elect to have him move in. Some have said that Mom needs to be in a home. She would not last. And, she may not be accepted because she is mobile. At least where I live, one question they ask is if the patient wanders. If so, they will not accept them. (Per someone who works in a nursing home.) Plus, we would have to hire someone at night to sit with her anyway since she is up several times during the night. So, for my Mom, it is better having her in her house.
For you, it may be hard on your marriage if you take your fil in. I could also be hard on your marriage if you don't. So, it is something you and your husband will have to discuss and work out. You also need options if you find that it doesn't work out.